Monday, August 30, 2010

IBI Helps Most Children to Some Degree

I was looking through some old links and happened across this link on ONTABA.  Adrienne Perry, a professor at York University, has a significant research interest in IBI and is actively publishing on this subject.

Of note from the link above:
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).
Here is an interesting note - even those children considered lower-functioning doubled their rate of development while in IBI.  Even those kids "cut off" from IBI because their "trajectory" is not altered doubled their rate of development.  This statement tells me that discharging children from IBI because progression is not fast enough is more about money and is not what is best for the child.  Putting kids in school therefore would slow their rate of development to what it would have been pre-treatment.  Put another way, transitioning to school a child who cannot learn from their environment halves their rate of development.

In a more recent journal article:
Perry, A et al.  Predictors of outcome for children receiving intensive behavioural intervention in a large, community based program.  Research In Autism Spectrum Disorders (2010). 

On the impact of age at entry:
"...if the goal of IBI is to alter developmental trajectories and boost children into the average range, this may only be feasible if children begin IBI when they are very young.  Thus, it is critical that efforts are made to encourage early diagnosis and to reduce wait lists and ensure children receive IBI early whenever possible." pg. 10
The above quote comes out of some discussion that "best outcome" cases were strongly correlated with age at entry.

On the use of benchmarks:
"Thus, it seems to us most responsible to offer children with autism an initial trial of IBI, as recommend by the Ontario Expert Clinical Panel and to monitor their progress carefully using clear and specific benchmarks, as recommended by the Ontario Benchmark Development Expert Panel." pg. 12
It is important to note the authors, with the notable exception of Adrienne Perry (to my knowledge) are all current clinical directors in the Ontario IBI program or have been clinical directors in the past.

Yes, I wholeheartedly agree with early diagnosis and intervention.  I do not agree with the benchmarks.  ABA can help all children regardless of how fast they are developing.

Monday, August 23, 2010

Vocalization Frustration

My mission in life lately has been to try to get Alanna to talk.  The more reasonable part of me says that if I just let her talk on her own and give her lots of opportunity to practice (which she does during her six hours of therapy every day) she will.  But the wound up, anal part of me wants progress so badly.

Here's the funny thing.  The girl can talk.  She has had some great words, many of which are as clear as day.  Sometimes, she will echo a word clear as a bell.  The problem is that she doesn't retain anything for long.  Words that come and go (or have come and gone) include go, muffin, pretzel, bubbles, up, no, ball, sticker, playdough, juice, round and round.  She used to also try to read this book called "I Can Dress Myself".  It was cute to see.  But this was only when she read it over and over again for days.  Sometimes we get random echos back for words she hears.  It seems like it's all motivation with her.

Trying to run the standard echoic (verbal imitation) types of ABA programs don't work.  You can tell her to say "ba", but she has no idea what ba is unless you try to pair "ba" will something she may want, like "bubbles".  But she can approximate better than "ba" for bubbles, usually.  We have several words we are using Kaufman cards with - starting at a lower approximation and moving to higher ones as she masters the lower ones.  Again though I hope as we move up she retains the words.  I would much rather her be able to say /b/ whenever she wants than "bubbles" on and off.  I'll take slow and steady with retension over long phrases or even words at this point.

This week we are going to see a speech language pathologist (SLP) with some experience with PROMPT.  PROMPT is a technique used for dyspraxia of speech, which basically means a person has trouble getting their oral muscles to do the right thing.  Obviously to Alanna hearing the sound is not enough to imitate it, at least most of the time.  PROMPT is designed to help cue the child by moving their mouths into the right position to make the sound.  So far Alanna has been reasonably tolerant of manipulation of her mouth.  I hope this can help her make the right sounds!  I'm pumped! 

Thursday, August 19, 2010

Stim Time

Stimming, or "self-stimulation", is a term many parents who have children with autism understand.  Children with autism enjoy many activities that seem odd to us and are generally done alone.  Generally I dislike stimming because it's time that could be replaced with more productive activities, but I realize Alanna enjoys it and sometimes she just needs to do it.

Some favourite stims include:
  • Bouncing on the couch
  • Kicking her feet
  • Many different sounds, including a cry sound that is really really irritating
  • Throwing things and picking them up, then throwing them again
  • Chewing on inedible things (PECS are a favourite)
Usually stimming means:
  • I'm bored
  • I'm tired
  • I really need sensory input (see I'm bored above)
This one is new and admittedly was kind of funny... (don't mind the highly expensive duct-taped couch).

Tuesday, August 17, 2010

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!

Sunday, August 15, 2010

Super Daddy

So now you get to hear from me...I am Tim's wife, Becca.  I hacked into Tim's blogger account so I could make a post about how awesome he is.  :)  Right now he is upstairs running an IBI session with Alanna just because he knows how much she craves structure, and how IBI has become such a part of her life that it seems we can't live too easily without it.

Last night was a bad night.  Alanna was up at 12:00, 2:00, 4:00 and then 6:00...and every single time, her Super Daddy was up taking one for the team...while I slept with my ear plugs in.  Sometimes I am so amazed at his patience and perseverance, especially on so little sleep.

So here's to you, love of my life, amazing father and husband.  Without you, I don't know what I would do...God has blessed me with you and I am forever grateful.

Saturday, August 14, 2010

Question and Answer

One the nice things about blogging is that with the right tools, you can see how people ended up on your blog.  Most non-regular readers come from Google, and it is interesting to see what they searched for to get them here.  In this entry, I will share some of that, plus perhaps try to get some more relevant information to the searcher, should they ever come back.

Search term:  autism and two months old and staring at trees; staring at trees autism; autistic people hate certain textures.

Entry hit:  Sensory Processing and the Autistic Child

This entry is probably the most popular one on this blog; it gets hit all the time, probably because sensory issues are very common with autism and they are hard to understand.

As for the particular searches I am guessing these people were looking for...

Alanna did stare at things for way too long when she was younger and this was a huge red flag for us.  As for a two month old - some people claim children can now be diagnosed or at least considered "at risk" this young, but I don't think very many people can do this.  Looking back, Alanna had signs at two months but they were very subtle.

On textures - yes, this is true.  Many children with autism hate certain textures  in their mouths, on their hands, on their bodies.  Sensory integration is a therapy that can be used to give these kids more or less sensory input as they need it.

Search Term:  ibi ontario 5 year old cutoff
Entry hit:  You Reap What You Sow

If the person searching for this was looking for information on cutoffs, let me say this:  the age cap has been gone for years.  It used to be true that children were discharged from early intervention when they turned six, but that is not true any longer.  The government of Ontario fought this in court (Wynberg v. Ontario), and even won, but then decided to remove the cap.

Search Term:  autism ontario services best place to live
Entry hit:  None

I think this person was looking for where they could live to get the best services.  This depends on what you are looking for.  If you want the largest variety of services, then go to Greater Toronto.  However, most of these require a lot of money.  If you are looking for the shortest waiting list for IBI in Ontario, then move to the Southwest region (London, Chatham, Windsor).

Search Term:  RDI toy ideas
Entry hit:  I Don't Get RDI

Another popular entry.  People are looking for more information on RDI probably because you have to pay money to get more information on RDI.  I am no expert on this topic, but based on what I know from other families, any and all toys can be used with RDI and the activity is based on your regular family routine.  Your RDI consultant would tell you what to do (note:  you have to pay for this consultant).

Search Term:  why is ibi so expensive
Entry hit:  I Really Hope IBI Works

This is a great question. Short answer:  IBI is intensive ABA and is a term almost exclusively used in Ontario.  It's expensive because to do it right, you need 30-40 hours of intervention per week.  Some quick math:

30 hours a week x $25/hour for a therapist x 52 weeks - $39,000
3 hours a week x $75/hour for a senior therapist or BCBA x 52 weeks = $11,700
3 hours a month x $175/hour for a psychologist to supervise x 12 months = $6300

Total cost = about $57,000 per year.  That's why.

Wednesday, August 11, 2010

Graduating More Instructor Therapists Won't Solve The Crisis

Given the high profile of autism services in Ontario (as a political hot potato), the ministries of Children and Youth Services and Education publish a common newsletter, like this one from Spring 2010.

In it, like so many other documents published by the Ontario government, is a story about how they are increasing the number of graduating Instructor Therapists.  In Ontario, an Instructor Therapist (IT) is the front-line ABA worker.  While I applaud the government on investing in these college (not university) level programs, they do ignore the core problem:  funding.  Unfortunately, like many trained teachers, I fear these graduates will be unemployed or underemployed as parents desperately seeking services cannot afford them.

So yes, they are training staff, but they provide insufficient funds to employ them.  The local autism programs pick up the best graduates, leaving the rest to find work in the direct funding or private sector.

I am happy to know that hopefully more ITs will be available since finding them is still difficult, at least outside Greater Toronto.  But we are one of the lucky families with funding. What about everyone else? 

Saturday, August 7, 2010

My Autism Heroes: Dr. Ivar Lovaas and Dr. Stanley Greenspan

I thought it appropriate to group these two "autism heroes" together.  This year (2010) has not been kind to great scientists in the field of autism.  Dr. Greenspan passed away earlier this year, and Dr. Ivar Lovaas, just last week.

Dr. Greenspan (top) was the leading figure behind the DIR model and Floortime, a popular intervention for autism.  While I do not subscribe to everything Floortime, there are a lot of ideas Dr. Greenspan has published that complement and enhance ABA therapy.  What I like about Floortime is the simplicity.  You don't pay to understand Floortime, much like you don't pay to understand ABA.  For this reason, if people are turned off by ABA I usually point them to Floortime over RDI.

Dr. Lovaas (bottom) was the individual responsible for bringing ABA into therapeutic use for people with autism.  Without him, we would not have the interventions we do today.  Thanks to him, there is hope for my daughter where so many years ago she would have been institutionalized with no hope for a future in this life.

I thank both gentleman from the bottom of my heart.  You both will be greatly missed.

Tuesday, August 3, 2010

Educational Justice

Recently I was made aware of a judicial case where a mother, in Ontario, was trying to place her child in a regular classroom with support.  This had been the scenario since kindergarten, and the student was now moving into grade four.

The special education committee ruled he should be placed in a special education classroom and not in a regular classroom with supports.  The parents appealed this ruling to a court, because they felt this was unfair.  Interestingly, they brought a local expert to argue that the ABA supports the school was offering was inadequate.  However, the tribunal could not force the school board to offer better supports; they could only rule on whether or not the child's placement was adequate.

Many parents are outraged by this.  These kinds of cases scare me because I see our future in them.

My opinion:
Is the ABA support offered by the school sufficient?
Probably not.  Most parents I have spoken to in the Toronto area have told me the ABA implementation in schools is woefully inadequate and many children are not learning in these classes as they were in IBI.

Is the placement valid?
I may get flamed for this, but it would seem that it is more appropriate, if the child is going to remain in school, to go to special education.  If his behaviours are very disruptive to the other students, there is no real choice.  We cannot expect a child who is screaming, stimming, or otherwise engaging in disruptive behaviour to be with a mainstream class because those students will be so distracted they may not learn well.  Additionally, if the student is functioning at a four or five year old level, there is no way they are learning the same curriculum as a mainstreamed grade four class.  It would seem the decision made is a good one.

I think the real underlying complaint in this judicial review is the quality of ABA programming in Ontario schools.  The complaint is that, despite an order from the Ministry of Education - PPM 140 - schools are still not prepared for students on the autism spectrum.  It is truly unfortunate and infuriating that there are private schools that do offer the support needed - for $50,000 a year.  After forking out this amount yearly for private IBI during the preschool years, who has the money left to afford such luxuries?

If school boards cannot provide appropriate supports, then give parents choice in education and issue vouchers like Alberta.  Let us choose the supports for our own children.

Alas, I fear the unions will never let this happen.  Education for all, and better education for the wealthy.  But we don't have two tier education or health, right?