Navigating the New World of Autism

We've been getting a lot of calls lately at my work from parents wanting assessments.  I was trying to figure out why when a really obvious explanation hit me: people have done the math.

The new Ontario rules cut off the publicly funded therapy for a child over the age of 5.  Most parents first suspect a problem with their children between 18 months and 2 1/2 years.  The wait time for a publicly funded diagnosis is 18 months, which puts the child at 3 or 4.  Add a two year wait for services and most kids who cannot afford private assessment will age out without getting any help at all.

Of course, that's only kids who show significant symptoms early on.  I can tell you that we also get a large number of families looking for a first time diagnosis for children in the 7-9 age range, the 13-15 age range and the 17-19 age range.  There are no publicly funded services for children that age.  I'm not even sure if they would qualify for the free assessments through the Ottawa Children's Treatment Centre.

Exclusive focus on early intervention ends up excluding a lot of children.  Not every child with autism is necessarily going to be detected before the age of 2, or even before the age of 5.  Don't get me wrong, early intervention is very important and when it can be done, it makes an incredible difference.  But it is not a complete solution, even for the children it works perfectly with.

The early intervention round of behaviour therapy is only the first one.  Most children will need additional therapy as they get older and the social expectations change.  Children with autism are also prone to depression and anxiety and can need specialized help to cope with it.  

Talk therapy is not always helpful if the therapist doesn't realize the communication limitations that autism can impose.  Most people understand "How are you feeling?" as a general prompt to talk.  Someone with autism may interpret it as a social script with only one appropriate answer "I'm fine" or assume it only applies to physical symptoms, which may not apply or may even assume it only refers to this particular moment in time.

It would be nice to hear some acknowledgment of the long term challenges which happen even when things are going well.  The stories presented tend to be inspirational (everything's better now) or depressing (we've never gotten any help and now it's a mess).  The reality is that this is hard and there are always new challenges to face.