Psychometrics Here I Come

Because the regional autism programs in Ontario rely so much on standardized testing to determine how well intensive ABA (known as IBI in Ontario) is working, I have (probably not surprisingly to some readers) taken an active interest in psychometrics - instruments, theory and interpretation.  It's really quite fascinating, but at the same time - potentially unfair - to children with autism and their parents.

There are two measures of importance that regional autism providers use to determine if IBI is effective.  The first is called adaptive behaviour.  A measure of adaptive behaviour is basically a test that determines how well - compared to children of the same age - a child is able to function "in the real world".  Examples include understanding when people give instructions, being able to ask for something, using the toilet, making phone calls, understanding that cars are dangerous, how to make friends, following rules, and how to play on a playground or cut with scissors.  It essentially covers everything we need to do in order to live independently "normal" lives.  Some psychologists use it as a measure of development because if someone has the adaptive behaviour of a two year old, they will mostly act and behave like a two year old does, even if they are say, four.  This is vastly different from intelligence (discussed next) because it is a very practical measure.  Someone with high IQ could potentially solve differential equations but yet be unable to make change.  Making change is much more practical (i.e. useful in everyday life) than solving equations (and more of the population can do it), so it's an adaptive behaviour but solving equations is not.

Most people with autism have severe deficits in adaptive behaviour.  If they didn't, they wouldn't have autism.  Usually as children with autism age, they continue to develop, but still slower than their peers, so their overall level of functioning continues to become more delayed.  If intervention can slow the delay by increasing rate of development, the Ontario regional autism providers deem IBI to be successful.

Intelligence is a completely different matter.  Although many estimate 75% of children with autistic disorder (not Asperger's or the generic PDD-NOS) to have a cognitive disability (IQ < 70), some do not have a cognitive delay or intellectual disability.  This is another important measure guiding discharge for IBI because if a child has an IQ equivalent of 24 month old and has adaptive behaviour around 24 months (or lower) and little change is observed, they typically will discharge from IBI with the explanation that the child has "maximized their potential given their cognitive functioning."

There are two types of intelligence.  Crystallized intelligence (often abbreviated Gc) is intellectual ability for a particular task.  Generally tests that look for Gc are verbal tests and involve vocabulary and knowledge of the world.  Children with autism usually do poorly with Gc.  It is very difficult to do a verbal test if you can't speak.  For this reason, good psychologists will measure non-verbally, using the non-verbal part of a test, or a non-verbal test that provides a full scale IQ.

Fluid intelligence (often abbreviated Gf) is general intellectual ability that can be applied in all situations.  It is usually tested with non-verbal tasks, such as doing puzzles, mazes, replicating block designs, remembering things, visualizing 3-D shapes in your head, etc.  Children with autism do much better at these tasks because they don't require language.

If you are interested, here are some common tasks that measure Gf that have been adapted for use on most modern IQ tests, such as Weschler tests:

• Kohs Block Design
• Raven's Progressive Matrices
• Porteus Mazes
• Spatial Span

Facing the Firing Squad

This week, we visit with Thames Valley Children's Centre to do a six month standardized test - our old favourite, the Vineland-II.  I have mixed feelings about this visit.  On the one hand, we know we will still some nice gains reported, but on the other hand, as Alanna ages, even though her "age equivalent" scores will increase (essentially, her developmental age in a particular area), her "standard scores" (corrected for age) will likely drop or remain stable.  My suspicion is that her communication and socialization scores will drop, but her daily living scores will come up (even the standard scores) because we have been working hard on self-help skills and helping out around the house (domestic skills).  This is actually a typical autism profile - higher "daily living" skills, lower communication and even lower socialization, although in Alanna's case, I think her communication might be lower mostly because her play skills are bumping up her score (we have focused in this area as well).


Something that has surprised us as we will were preparing for this test is that Alanna's motor skills have been neglected over the past six months.  She has not made a lot of gross motor gains and in fact, in some areas, she has caused us concern.  Her balance, likely caused by an impaired proprioceptive sense, needs a lot of improvement.  She rarely runs because (we think) she thinks she will fall.  She trips and falls in general, runs into things, and has fallen down the stairs a few times.  She is "pathologically clumsy".  In any case, we will likely see a huge standard score drop in motor skills and will have to work hard in this category to ensure Alanna is able to continue to participate in activities later on, like more complex playground equipment, hopscotch, and riding a tricycle.


So while I am hopeful and in some ways happy to see how far she has come, I am also wary of the IBI cutoff boogeyman, the one excuse the autism program can use to claim IBI isn't working for Alanna.  So I hope, yet I dread.  Zip up the kevlar vests, we're heading in...

Parental Assessment

The Childhood Autism Rating Scale (CARS) is a common clinical assessment used to determine if a child falls on the autism spectrum.  When we had Alanna initially diagnosed at 22 months, this instrument was used (along with many others) to show she had autistic disorder.


Looking back at the clinician's rating (and ours - both were on the psychological assessment), we rated Alanna 47.  The highest possible score is 60, and severe autism is anything 37 or higher.


We recently did the CARS together and Alanna's score dropped from 47 (our original score) to 37.  This means Alanna (according to us - we are not clinicians) is close to dropping from "severe" to "mild/moderate" (she needs one more 1/2 point to drop to moderate).  We were being conservative so I am pretty confident a psychologist observing Alanna would probably rate in a similar way.  Here's the cool thing... the cut off score is 30.  If Alanna were to drop another 8 points in the next couple of years, she would technically be rated as "not having autism" on this scale.


Now - it's just one scale.  Other scales could still rate Alanna has having autism even if the CARS does not.  The CARS also doesn't speak at all to her intellectual or adaptive functioning.  She could still have serious delays even falling off the spectrum.  Still, it is very positive to see that she appears "less autistic" than she used to.  Now, don't get me wrong - you would notice right away something is "off" if you met her.  But take it from me - she is much less autistic than a year ago.  She has come so much out of her shell.  In particular (from the CARS) we see she:

• Is better at relating to people.
• Has become much better at imitating.
• Has improved play skills - she knows how to play with some toys.
• Can cope with changes in her environment.
• Is much less fearful and anxious.
• Has better non-verbal communication.

It is nice to see this laid out in an assessment - it confirms what we thought but makes us be a little more critical of our opinions.  Sometimes the parents can be too optimistic.

Assessments

The provincial IBI program in Ontario likes to use two measures of progress - Adaptive Behaviour, like the Vineland II test, and IQ tests, such as the Weschler Preschool and Primary Scale of Intelligence (WPPSI).  Some parents do not care particularly about these measures, particularly the IQ test.  IQ is notoriously difficult to measure for autistic individuals due to the nature of autism:  communication is impaired so it is difficult for the individual to explain what they truly know.


If you live in Ontario and have a child with autism, you need to care about these instruments.  In particular, the Vineland II measures "adaptive" functioning.  This is basically a test to measure how well your child functions in life as compared to children their own age.  When used in an IBI program, it can typically be used to determine a child's "trajectory".  For example, in a six month period, is a child in IBI progressing at least six months in development for each domain?  If so, they are falling no further behind but not catching up either.  Failure to show enough improvement at the right rate results in the conclusion that the child's "development trajectory" is not being changed by IBI and results in a quick discharge thereafter.


The theory of intensive ABA (or IBI in Ontario) is that your child should be showing clinically significant gains across most domains or it is not effective (read:  not worth spending $60,000 per year of taxpayer money).  However, interestingly a 2006 study based on the autism program in Ontario found that all children, even those who were still progressing slowly, doubled their rate of development while in IBI.  From the study:

Rate of Development. As noted above, children were quite variable but, on average, were substantially delayed developmentally prior to the program. In fact, they had been developing at about one-third of the rate of a typically developing child. Children's rate of development (based on the Vineland age equivalent scores) during IBI was approximately double their rate prior to IBI, and this was true for all three initial subgroups, i.e., even the lower functioning children doubled their rate of development, as a group. This suggests that the developmental trajectory of children was altered during their participation in the IBI program. Many children were even developing at a typical rate (although they may not have "caught up" to typical peers).

So if you are parent of child in IBI, or waiting for IBI - pay attention to this test.  It is used to make clinical decisions on your child's continued progression in IBI.

Could It Be Autism? Part 2

Some time ago, I posted on our diagnosis experience and what seems to be a general lack of information available to parents with children diagnosed with autism.  Unfortunately, an acquaintance of ours recently discovered his son likely has autism.  Like we were, they were completely lost and there is no good information available.  So, with that in mind, I will give my unsolicited advice.  Could it be autism?  If you suspect, or know someone who might, send them here and perhaps this will help.  This will be of particular help to parents located in Ontario because I know this system best (though I have done some research on BC and Alberta).


Top Seven Red Flags

• Your child does not respond to his or her name when you call most of the time.
• Your child does not seem to be developing speech normally.  If you are not sure, check out this site.
• Your child does not seem to know how to play with toys properly.  They may ignore them, play with them in an odd way, or play with them in a childish way.  They may be obsessed with parts of toys.
• Your child does not look at you and try to communicate with you using gestures.
• Your child does not point to ask for something or show they are interested in something.
• Your child does not shift their attention from you to an object and then back to you again.  This is called shared or joint attention.
• Your child does not look at you to see what you think before responding to a stranger or trying a new activity.  This is called social referencing.

Okay, I'm Worried Now

If some of the red flags sound like your child, the next best place to go is Autism Speaks video library.  It will show you typical development versus a child with Autism Spectrum Disorder, or ASD.  You'll need to sign up but it is worth it.  

The autism spectrum consists of three disorders:  autistic disorder, the most severe, PDD-NOS, or atypical autism, which is more moderate because not all symptoms are present, and Asperger's Syndrome, in which children have average or higher than average cognition and no speech delay.  Note that while Asperger's Syndrome presents with no speech delay, children with this form of autism have a lot of difficulty with language and how to use it properly.

Now what?

Most people will now say you should contact your doctor.  Outside of Canada, this may be the best bet.  However, in Ontario, it is faster to engage a clinical psychologist if you can afford one.  If you can't afford to go to a psychologist for an evaluation, then you can use the public system but it will take a year to get a diagnosis.  You need a diagnosis to access treatments.  A psychological evaluation can cost $2000.

If you wish to contact your doctor, you can print off and bring in the M-CHAT, a diagnostic screening tool most doctors should know about.  If your doctor agrees with you, they will probably refer you to a developmental pediatrician.  Most developmental pediatricians have a waiting list several months long.

If you wish to engage a psychologist, contact the College of Psychologists of Ontario.  Use the public registry to find a clinical psychologist specializing in autism (look for psychologists who work with children).  Contact them to begin.  They will conduct a psychological assessment that will tell you definitively if your child has autism.  Note that a developmental pediatrician will probably order the same tests.

While Waiting for a Diagnosis

You should have your child seeing a speech and language pathologist.  In Ontario, early childhood intervention services are available.  You can also engage in a private service.  If possible, try to take the Hanen More Than Words program.  It is an excellent parent program and will give you lots of tools to help your child interact and connect with you.  The program will likely be offered through your local speech pathologist.

The key to intervention is trying to pull your child into your world.  Even though it is difficult, the more time you spend effectively engaging your child, the better.

Got a Diagnosis

Once you have a diagnosis you can move towards treatment.  The next step is to contact your autism intervention program (this applies only to Ontario).  There are nine regional agencies, detailed here.  Once you contact the program, you will have to see if you are eligible.  Your child will be tested to see if they are severe enough.  If they are not "severe" enough, you will not receive any treatment beyond what you are already receiving and if you want Applied Behavioural Analysis (ABA) - used in Intensive Behavioural Intervention (IBI) then you will have to pay yourself.

Assuming your child is eligible, you will be placed on the waiting list for service.  The average wait time is about two years but could be as long as three years.  You may receive some service in the meantime; otherwise, you are on your own until service begins.  I highly recommend engaging a parent coach to help you through this time.  The coach should be an experienced ABA therapist, who you can find on ABACUS.  The coach can help you work through some problem behaviours.

If possible, you should try to pay for some ABA therapy yourself.  A proper intensive program can cost $50,000 per year or more, which is too much for most people.  But you can make progress paying far less.  Invest what money you can.

Functional Communication

While you wait for service in IBI, you should try to establish a functional communication system.  This is usually sign language or the Picture Exchange Communication System (PECS).  Inappropriate behaviour is usually caused by frustration in communication.  Replacing the inappropriate behaviour with something like PECS or sign will make things better for you.  The parent coach or a speech language pathologist with experience in autism can help you establish a functional communication system.

Importance of Early Diagnosis

If you wait on the public system to diagnose your child, they will potentially not get treatment for three or four years.  This is precious time lost.  Go with a private diagnosis if you can afford it!

Straws and IQ

Alanna is engaging in her favourite pastime in these photos:  drinking juice.  She loves juice.  I have several spare PECs on deck for juice because it is what she asks for most frequently.  Now, before you accuse me of loading her up on sugar, "juice" is really short for "mostly water with some juice for flavour".  Attempts to give Alanna water have so far failed miserably - and attempts to give "wean" her off the juice additive have failed too.  We could probably do it if we wanted to, but the amount of total juice she is getting is still not that much overall.

Notice the difference between pictures!  The photo on the left is Alanna using her sippy cup.  The photo of the right is Alanna using a straw.  Woohoo, the girl uses a straw!  Most parents, if asked how their kids learned to use a straw, will tell you a story like this:  "Well, I had a cup with a straw and she wanted it so I let her try and she liked it."  Not this girl.  Oh no, not even close.  This took weeks of trying, and we finally had a breakthrough when we used a juice box because we could squeeze it into her mouth to show her good things were inside.  Every little victory is huge for us, including this one.

On another note, Alanna received her first assessment since beginning funded IBI.  Cognitively, she is at the 16th percentile - which translates to an age equivalent of 24 months, or an IQ of 85.  This means that Alanna does not appear to have an intellectual disability at this time!  We are thrilled with this result because studies have shown that IQ is a major predictor of outcome.