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!

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