How do I break the news?

My cousin Louise, who lives on the other side of the world, recently wrote to me asking my advice about a child in her care.  She is convinced the boy is autistic, but the parents don't see it.  She wants to help.

As background, Louise's brother has Asperger's.  Throughout her career in child care, she has once helped diagnose a teenager with Asperger's.  She runs a small day care centre out of her home, a job she clearly loves.

Disclaimer:  I took a bit of artistic license to make the conversation look like a readable Ann Landers-style article.  It was cut-and-paste together from a series of emails between Louise and me.

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Alain,

I have a little guy named Trevor who I suspect has autism.  I am having a hard time conveying my thoughts to his parents.  Of course I don't say "I think your child is autistic" because that would be against the law (I don't have the professional qualifications to diagnose autism).

The reason why I am really concerned about it being addressed right now is that they are moving out of town in a couple of months.  I have worked so darn hard with him to have him where he is at now and I don't want him to regress any further than he already has lately.  In the past two weeks, this little guy (almost 3 years old) has really been regressing further and further back into old habits and unfavourable tendencies (usually of safety concern and/or health concern).  Do you find your boys regress often from accomplishments?

Here is a list of things in Trevor's world that make me believe he needs to be diagnosed so we can help him better:

  • Spinning:  Trevor loves spinning anything, including himself.

  • Trouble with transitions:  he has meltdowns when we are to move on from something that he isn't ready to move on from (leaving the park, going to the table to eat while he is playing, changing his diaper, etc).

  • Flapping:  he constantly flaps for joy and anger.  If it is for joy he will jump too.

  • Hiding:  this is new and scary.  If he wants to avoid a transition/person/thing he will hide, sit still and wait.  It doesn't matter if you call him he doesn't move or make a sound.

  • Running away suddenly:  I hold Trevor's hand wherever we go even if it is in a relatively safe place.  Often he doesn't like it and will fight it but it is necessary.  For whatever reason he likes to make sudden darts.  We will be walking across the street and he will pull away and run without fear.  I chase him screaming his name and he WILL NOT stop.  Getting upset with him is pointless because he absolutely does not get he is doing something wrong.

  • He mimics and repeats current or past conversations.

  • Obsession with routine.

  • Licks/sucks things that have an abstract/out of place feel to him.  For example, there are two rub mark on the concrete floor at McDonald's.  He will lay on the floor and suck/lick these rub marks...YUCK...he doesn't get that.

I know if a doctor spent but 5 minutes with him, he/she will know to have things investigated further.

Ok, I just realized I could go on for hours so I hope that is enough for you to understand. How do I do this? How do I present it without tip toeing like I have been?  Should I be bold and blunt?  I think that might be the only way they will hear me but I don't want them to think that I am attacking their child.  I adore Trevor.  He is unique and very special.  I love that we have big accomplishments even if he doesn't.  I love his excitement for things that may not be normal to most so really I have tons to lose if they feel that I am attacking their child and singling him out.  I am not trying to bully them out of my care (like I know every provider who encounters Trevor would or has suggested I should).  I care.

Help me please.

Louise

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My response is below.

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Louise,

I can confirm that autistic kids regress all the time.  They seem to constantly take two steps forward, three steps back, pause and take two steps forward.  One of the reasons people were convinced autism is linked to some vaccinations for most of the last decade is because some autistic kids start out seemingly normal then regress at one year of age, around the time the vaccinations are administered.

You did the right thing by not telling Trevor's parents flat out that you think their little boy is autistic.  Against the law or not, the news that one's little bundle of joy has a learning disability is heart-breaking.  And, unlike many diagnoses, there is always plenty of room for doubt.  Remember that they don't know as much about autism as you do.  The word "autism" brings Rain Man and other extreme cases to their minds.  They will always find excuses.  Have you read Anne's blog?  When Gaston was showing all the signs of autism, we dealt with every excuse from bilingualism to poor hearing.  When a paediatrician finally told Anne that Gaston could have Asperger's Syndrome, and she repeated the diagnosis to me, I dismissed the condition as a mere eccentricity.

To accept Trevor's autism, they need to surpass the spectre of denial.  This will be even more difficult if Trevor has words:  he sounds like he can repeat entire conversations verbatim.  At a guess, I'd say he's Asperger's, which basically means "autism with speech".  In Australia, Asperger's children often suffer more than autistic children without speech because they don't get an early diagnosis.  Sometimes, they don't get diagnosed until they're in their teens.  Overcoming Trevor's parents denial is their job, not yours.  The one who finally gives them the diagnosis will be in their bad books forever, going down in their future blogs as the "big gun" who bluntly told them exactly what they didn't want to hear—and he/she will need a whole wall full of diplomas if he/she doesn't want to be dismissed as a quack!

Getting an autism diagnosis is hard.  Don’t put too much faith in family doctors (General Practitioners, or GP's).  When Gaston was Trevor’s age and he went crazy in our GP’s office at every check-up, the most the doctor would ever say is “Gee, he’s very active”.  Surprisingly often, GP's have no clue about autism, which really doesn’t help the long and confusing journey towards a diagnosis.  In my blog entry Drunk and Stoned, I describe how doctors sent Gaston to an optometrist to fix his ear problem, and how we all ascribed his lack of speech to ear infections.  You would think autism is covered in medical school.  Having friends who are doctors, I can assure you that it is not.

The best you can do is gently nudge the parents in the right direction.  To do this, you need to get your whole team on board.  Have you convinced the rest of your staff that Trevor is autistic?  Or, at least, that there's something not quite right which needs further investigation?  If yes, your words will carry a lot more weight if you start out by explaining that "we all agree" and "we have all discussed beforehand".  If there are two of you in the room when you have the dreaded conversation, it will carry even more weight.  Spell out that you (plural you) believe echoing entire conversations is not normal language development—they might actually think Trevor is clever because of his ability to do so—and they might want to consult with a speech therapist.

If at all possible, try to pin down both parents for this talk.  If you only talk to one, then the one will need to convince the other.  The "spectre of denial" will be harder to overcome if this is the case.  I can just imagine Mom trying to repeat what you said to Dad and Dad not believing a word.  Just like many blogs I've read.  Just like what Anne and I went through personally.  Have you thought of calling both parents separately to arrange the meeting?

Don't mention the extreme stuff like the tantrums and licking the floor at McDonald's until they start agreeing with you.  Once they're on your side, however, you can bring on the waterworks by talking about everything that is unusual with Trevor.  They'll cry (she'll cry), but more importantly, they'll get a big hint that something about their little boy's behaviour needs further investigation.  Then your job is done.

Hints build up.  If they don't get professional help after their talk with you, Trevor's next care-giver might drop another hint.  Or a GP with some autism experience might say something.  Or a nosy stranger at a supermarket.  When they finally get professional help, a speech therapist or psychologist could get the ball rolling for a full-blown diagnosis.

Good luck,
Alain

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I would love as much feedback as possible because this felt like the right advice.  If it was misplaced or misguided, I need to know now.  I feel this won't be my last question about how to deal with autism.  Keep in mind that Louise reads this blog:  feel free to address your comments to her, too.