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.

Nicknames

When my cousin Sophie was about six, she would fly into a rage if someone dared to call her "baby".  I discovered this when Sophie and I were watching her brother Benoit (aged 10 at the time) play hockey.  One of the parents on the sidelines knew he could get a reaction out of Sophie by calling her "Sophie baby".  It was a term of endearment in English.  Not in French.  Her exact words of defence were "Je ne suis pas un bébé" (meaning, "I am not a baby").  Absent-mindedly, when my interest was back on my cousin's game, I yelled out "Go, Benny baby!"  This drew immediate and severe admonishment from Benoit's parents (my aunt and uncle) who didn't want their son to be teased for being called "baby".

If you have a child about that age, see how they react if you call them "baby" or "my little kitten" or something equally sickening.  I'm guessing they wouldn't like it.  My two little guys, however, have absolutely no qualms.

One of the advantages of having kids who can't talk is that they don't object to cutesy-poo nicknames.   So far, Anne and I have gotten away with
  • baby
  • puppy
  • poopy
  • petit poussin (which means "little chick")
  • monsieur minou ("mister kitty cat")
  • pépère ("grandpa")
  • stinky
  • Farty Smurf
and countless other things that would never be tolerated by any five to seven year old with a proper grasp of either the English or French languages.

I think the fun is about to run out,  though.  Last week, when I was leaving for work, I tried to get the usual "Bye papa" out of Rémi.  He gave me a "Bye baby".

Vaccination


A diagnosis of autism in the family can lead to much confusion and loneliness. The world wide web can provide great supports to help get through the early stages of accepting the diagnosis, but it can also add to the confusion: the web abounds with snake oil salesmen who will gladly take your money to cure your child's newly discovered autism. Further adding to the confusion, a lot of people sincerely believe that their own children's autism was caused by the Measles, Mumps and Rubella (MMR) vaccine.

Doubts and fears of vaccinations have been around since vaccinations have been around. Wikipedia has a succinct summary of the history of vaccine controversies: http://en.wikipedia.org/wiki/Vaccine_controversy. In summary, history frequently repeats itself as follows: (1) some controversy begins to surround a particular vaccine, (2) vaccinations decrease across the population despite ample proof against the controversy and (3) children get sick and die because of the disease they should have been inoculated against.

The belief that the MMR vaccine causes autism is upheld because the first signs of autism are often only clear when a child is one year old, which is the time when most children are given the triple vaccine.

The chronology of the MMR vaccine's believed link to autism is as follows:
  • 1994: a solicitor named Richard Barr successfully wins legal aid funding for the pursuit of a class action against the manufacturers of MMR under the Consumer Protection Act 1987 in the United Kingdom. The class action case was aimed at Aventis Pasteur, SmithKlineBeecham, and Merck, all manufacturers of MMR vaccines. The suit was based on a claim that MMR is a defective product and should not have been used. Owing to a 10 year limit on the period in which an action can be brought under the Consumer Protection Act, court proceedings were started before the medical research had concluded.
  • 1995: medical researcher Dr Andrew Wakefield,image
following up his 1993 paper discussing a possible link between measles and Crohn's disease, publishes a paper suggesting a link between the measles vaccine and inflammatory bowel disease.
  • 1996: Barr, noticing Wakefield's two publications, contacts Wakefield for his expertise.
  • 1998: Wakefield and twelve collaborators publish a paper in The Lancet, a respected British medical journal, strongly suggesting a link between the MMR vaccine and autism. Wakefield is the lead author. In conjunction with the release of the paper, Wakefield leads a press conference advising parents to vaccinate their children against measles, mumps and rubella in three shots, separated one year apart, rather than in the one single shot which is the MMR vaccine.
  • 2004: A Sunday Times article by Brian Deer reveals that Wakefield received £55,000 funding from Barr and other solicitors for his research alleging a link between the MMR vaccine and autism, a clear conflict of interest. Furthermore, Deer accuses Wakefield of subjecting the 12 children used in the study to a battery of invasive procedures, including colonoscopies and lumbar punctures. The article reveals that several of the parents of the twelve children were Barr's clients, and there was no actual scientific evidence of an autism-vaccine link in the paper, only testimonials from the parents. Many of the 1998 paper's collaborators are shocked to learn of the conflict of interest. Soon after, ten of the twelve collaborators retract the interpretation from the paper linking the MMR vaccine with autism. In 2006, Deer would reveal that Wakefield had received a further £400,000 from the lawyers responsible for the MMR lawsuit.
  • 2005: Shortly after Wakefield's 1998 article, Japan had begun administering the MMR vaccine in three separate doses. Years later, in 2005, an article in The Journal of Child Psychology and Psychiatry demonstrates there is no link between the combination of the three vaccines and autism. The rate of autism has continued to increase in Japan, same as the rest of the world, despite the separation of the vaccinations.
  • 2007: the General Medical Council (GMC), which is responsible for licensing doctors and supervising medical ethics in the UK, begins investigation of the affair.
  • Also in 2007, former Playboy Playmate of the Year Jenny McCarthy
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publishes Louder than Words: A mother's journey in healing autism. It is a memoir of the diagnosis of Ms McCarthy's son, Evan, with autism. The book suggests (but never explicitly states) that Evan's autism was caused by the MMR vaccine. A foreword, written by paediatrician Jerry J Kartzinel, also suggests (but never explicitly states) that his own son's autism was caused by the vaccine. The memoir also suggests that autism can be cured using the correct diet and behavioural therapies.
  • 2008: The rate of measles inoculation in the UK has now fallen to below 80% compared with 93% in 1998 (pre controversy).  The number of confirmed cases of measles in England and Wales have risen from 56 in 1998 to 1348 in 2008, with two child fatalities this year.
  • January 2010: the GMC gives a preliminary verdict of its investigation: Wakefield was found to have acted "dishonestly and irresponsibly" and to have acted with "callous disregard" for the children involved in his study, conducting unnecessary and invasive tests. The trial used for the 1998 paper involved procedures with medical risks but was not approved by an Independent Ethics Committee. Wakefield was shown to have multiple conflicts of interest in the conduct of the study. Days later, The Lancet retracts Wakefield's paper from the public record.
  • May 2010: the GMC publishes its verdict: Dr Wakefield is found guilty of serious professional misconduct over unethical research, and is struck off the medical register.
  • In mid-2010, Wakefield publishes the autobiographical Callous Disregard, with foreword by Ms McCarthy, arguing that he has been unfairly treated by the medical and scientific establishment.  He is not licensed to practise medicine in the US nor in the UK.
(The above chronology is mostly paraphrased from http://en.wikipedia.org/wiki/MMR_vaccine_controversy and other Wikipedia sites. I know Wikipedia is not always 100% reliable, and it certainly isn't my only source. However, having done my own research, I have chosen to paraphrase Wikipedia since it seems to neatly summarise what I have already found to be true.)

Since 1998, many scientific and medical papers (in addition to the one mentioned above) have proven that there is no link between any vaccinations and autism. So why do many people continue to believe there is? Why would so many people rather believe the testimonies of a Playboy bunny and a disgraced doctor, rather than believe a decade of hard evidence? The answer is, quite simply, the majority do not. Today, in 2010, the MMR vaccine "controversy" is just a lot of noise being made by an ignorant few. Thanks to the web, a noisy minority can easily make an unpopular belief seem popular: it is up to every parent to be on their guard and seek out the truth for themselves. 

For those of you who would go with gut instinct rather than published scientific papers, I want give a gut-instinct story which shows the controversy is just a big load of hooey by recounting two conversations I had with my wife, Anne. 

The first conversation took place years ago, when our children were newly diagnosed with autism. The controversy surrounding MMR only came to our attention through conversations with other parents, and through a documentary which Anne and I watched together. The documentary starts with some testimonials of parents who swear their kids became autistic after receiving the vaccination. Then, the documentary gives several pieces of evidence demonstrating there is absolutely no link between autism and the vaccination. The most convincing argument was an exhaustive study of all Danish children over the course of several years: the Danes, apparently, keep a central database of every single medical visit, including inoculations and autism diagnoses. A study of this data proved there is no link between the two. The documentary ends by revisiting the parents from the start, who still swear MMR causes autism. When the show was over, Anne tearfully said to me, "I don't know why you insist on giving the kids those stupid vaccinations. You probably caused their autism."

The second conversation took place last week, when I told Anne I wanted to write a blog entry about the vaccination controversy. She warned me that I'd get a lot of hate mail. She told me that one of the mothers in our neighbourhood still strongly believes that MMR vaccination causes autism. I asked Anne if she thought there was a link. She said "No because, looking back, I felt in my gut that something wasn't right with Rémi long before he turned one and got vaccinated."

YouTube

Rémi loves watching trains on YouTube.  But since he can't use the mouse, he's always pulling me by the hand towards the computer and pointing at the next video he wants to watch.  I thought I'd take the opportunity to teach him a bit of language:

Me:  "What do you want?"

Ré:   "Train"

Me:  "I want..."

Ré:   "I want…"

Me:  "...a train…"

Ré:   "...a train…"

Me:  "...on…"

Ré:   "...on…"

Me:  "YouTube."

Ré:   "Me Tube!"

I thought autistic kids at his stage only echoed stuff!  Should I be proud that he's making the same silly mistakes as regular kids?

Blog Reviews

Here are some blogs I started following at around the same time I started publishing my own blog.  Since I am not familiar with the standard rating system of blogs, and since all blogs are different the same way that all foods are different, I decided to adopt my own review system:  comparing blogs to food.   Because everyone can relate to food, right?  Or is it just weird?

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Journeys with Autism:  http://www.journeyswithautism.com

Rachel Cohen-Rottenberg, a mother who is blogging about her own autism, which was only diagnosed the year she turned 50.  She gives an autistic person's point of view on things, which I find fascinating and insightful.

Rating:  A 3-course meal at an exotic restaurant.  You learn something new every time you go and you always walk away satisfied.  But you might need to get past a little culture shock at first, like when people used to balk at raw fish before sushi became popular.

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Big Daddy Autism: http://bigdaddyautism.com/

I've been reading this blog for weeks.  As far as I can tell, the blogger's name is Big Daddy, his wife's name is Mrs Big Daddy (or MBD for short), the autistic son's name is Griffin and the younger sister's name is Lil' Sis.  These are often short, snappy, funny stories which relate actual conversations between Big Daddy and Griffin.  The blog is updated almost daily, and they always make me smile.  And they're not always about Griffin:  Big Daddy also posts obscure cartoons, and he once photographed the word "HELP" written in lima beans while at fat camp.  Hilarious.

Rating:  A comforting desert or snack which you eat often, and assume is junk food, but is actually very good for your body and soul.  Like blueberry pie or popcorn.

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My wife's blog.  She only wrote one long entry.  Hopefully she'll write more, but she already essentially told me she wouldn't. 

Rating:  A single 3-course meal at a 5-star restaurant, but for some weird reason you can never find that restaurant again.  *sigh*

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Living with Asparagus - the other one:  http://livingwithasparagus.wordpress.com

I wouldn't find it creepy to find another blog called "Living with asparagus", except this blog started exactly one week before our one started, and it's also in Australia.  Weird, isn't it?  There are some stories in here which made me laugh, so I recommend it...

Rating:  A fresh salad sandwich:  a satisfying, quick meal.

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The Joy of Autism:  http://www.esteeklar.com

Estée Klar, a single Toronto woman with an autistic son named Adam.  Familiar and everyday, but written with class.  This entry in particular might make you think twice about the ABA system of teaching and start questioning what other methods might be available:  Are We Listening?

Rating:  Casserole served on fine china:  comfort food served with elegance.

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Followed it because I liked the name.  Regretted it immediately.  All the entries I've read so far have been about breastfeeding, or complaining about the fact that the author owns a mini-van, or complaining about her husband's driving.  She says autism is awful but she won't explain why it's awful because she's too busy talking about herself.  Crude and boring.

Rating:  An Aussie meat pie or a bad hot dog.  Little nutritional value, forgettable flavour and there is an unpleasant lingering aftertaste.

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Autism and Behaviour Management:  http://autismmanagement.blogspot.com/

The saddest and scariest blog entry I've ever read in my life is called Autism and Violence, about an Asperger's child who grows up to be a violent man.

Rating:  A high-fibre vegan detox meal.  Good for you, everyone should have one occasionally, but whether you like it or not is a matter of opinion.

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Here is a directory of autism blogs on Bloggerhttp://autismblogsdirectory.blogspot.com/.  

If there are any particularly good blogs out there, please let me know.  One  thing is for sure:  there are a lot of blogs out there.  So far, I like more than I dislike.  A bit of guidance might help me zero in on the best bits, so if you know your way around autism blogs please leave a comment.

She said

Anne is writing her own blog.  It's here.  It's called Living with Asparagus.

Drunk and Stoned

In the year that Gaston was three years old, I've seen him stoned on one occasion and drunk on another.  Here's why.

Stoned:

When Gaston was two years old, he was sick all the time.  At that age, kids start picking up all kinds of viruses and bugs—particularly when they start going to crèche or kindergarten.  For reasons unknown to us, Gaston could never beat these common colds:  every sniffle would turn into a full-blown ear infection or conjunctivitis or both.  For months, he seemed to be on a two week cycle:  one week on antibiotics followed by one week off antibiotics, picking up a new virus.  This started long before we knew anything about autism and none of the doctors who saw Gaston suspected anything of the sort.  We thought his language delay was due to mechanical problems with his ear, nose and throat.

One of the General Practitioner (GP) doctors who saw Gaston suggested we take him to an optometrist specialising in children, which we did.  The optometrist thought it was crazy to be involved in an Ear, Nose and Throat (ENT) problem, but he didn't object to getting his fee so he played along.  Eventually, we found a GP with the good sense to direct us to an ENT specialist, who figured out that Gaston was getting fluid build-up inside his head.  The solution was to put something called grommets into his eardrums to aerate his middle ear.  The specialist likened the effect of the grommets to punching a second hole into a can of evaporated milk so the milk could flow more freely out of the main hole.  The insertion procedure would require surgery.  Since we didn't have private health insurance at the time, we were put on the hospital's waiting list for Gaston to get surgery months later, at around the time of his third birthday.

Throughout these months of visiting various doctors, we learned of Gaston's phobia of doctors.  A mere routine examination (shine a light in his ear and put a stethoscope to his chest and back) involved screams, tears and tantrums.  I have learned a few tricks for forcing a child through a medical exam.  The best was given to me by a German ENT specialist, using a move he called "the Russian nurse maid":  I would put Gaston on one knee, lock his legs down with my free leg, lock his torso and arms close to mine with one arm and hold his head with my free arm.  The doctor could then freely look into his ears while Gaston wailed like a banshee.

On the day of the surgery, I went with him to the hospital to stay with him through his every waking moment.  Anne stayed at home with Rémi, who was just a little baby.  The general anaesthetic would occur in two stages:  first, a nurse would inject him with something that would make him very drowsy.  A half-hour later, after the injection had a chance to work its full effect, they would put a gas mask over his face to knock him out completely.  I could be with him right up to the knockout to calm and reassure him.

The effect of the injection can be best described as making him stoned.  He tried to get up and walk, but he was so dizzy that he would fall over.  Part of my job was to prevent him from moving around.  I managed to distract him with his white teddy bear.  I held it up to his face, an arm's length away, and made it approach his face in steps while chanting "teddy, teddy, TEDDY!  TEDDDDYYYY!!!"  The first reaction was one of utter hilarity.  He couldn't stop laughing!  He was falling over in his bed!  Everyone else in the sick bay was turning to look at the little blond boy laughing his head off.  Gaston is the funniest stoned person I'd ever seen!  The teddy-chanting game is one we would continue to play for years to come.

Moments later, a woman with a guitar came to sing for all the children in the sick bay.  She sang "Bananas in pyjamas" and handed out hand-drawn, laminated paper cut-outs of the Bananas in Pyjamas characters for the kids to wave in the air while she sang.  Gaston was so smitten by his that the woman let him keep it:  we still have it hanging in his bedroom to this day.  Gaston's eyes were completely glazed over, at this point, and he was staring at his Bananas cut-out, utterly fixated.  When the gas mask moment came, it wasn't as dramatic as I thought it would be.  I was allowed to read him his favourite book, Green Eggs and Ham by Dr Seuss, during the final stages of his consciousness before surgery.

The surgery was a success.  They kept him overnight to monitor his heart rate, but this was just a routine precaution.  I was allowed to stay with him.  Over the next year, Gaston was rarely sick.  When he did catch a cold, he was able to beat it on his own for the first time in his life.  We finally got a reprieve from the nasty ear and eye infections.  The grommets would fall out a year later, as predicted.

Sadly, Gaston's strange behaviours and lack of language persisted.   Anne still regularly went to a weekly playgroup with all the mothers from our old neighbourhood, and she often came home upset that the other kids would talk to their mothers, eat their snacks and play with each other while Anne would spend the entire session trying to stop Gaston from locking himself in the bathroom.  It felt as though his behaviours were getting worse, but I think they only seemed worse because the other kids his age were growing up while Gaston was merely growing.  He might have had problems with his middle ear, but we would learn over the coming year that our little boy is autistic, and there is no little silicon tube which could be surgically inserted into his head to help him overcome that.

Drunk:

Gaston was obsessed with brightly coloured liquids.  He had once made himself sick while tasting green Palmolive dish soap.  You'd think he'd learn from the experience.  But when he was about to turn four—almost a year after the grommet surgery and shortly after his autism diagnosis—he helped himself to a few gulps of minty green Listerine.  He didn't like it, but he didn't vomit it either.  Panicked, Anne called the poison hotline.  They told her it wasn't serious:  she was to give him plenty of water and keep an eye on him.  She was on her way to the aforementioned mother's group, and she begged me to leave work early to help her.

Gaston is a funny drunk.  He laughed a lot more easily and didn't have a single big tantrum the entire time I saw him under the influence.  When the other mothers got over their concern for his safety, they had a good laugh, too.  Anne never laughed because she was worried about possible long-term damage to his brain and liver.  I think he'll be okay, though.  As long as we keep him away from the crème de menthe.

Dare to be annoying

Years ago, when Gaston was three and a half years old, we just had him diagnosed with autism spectrum disorder.  Anne and I were in mourning, as though officially learning he is autistic meant he had just become autistic.  I think we were mainly saddened by the bleak outlook ahead of us.  Would he go to a regular school?  The thought of him going to a special school scared us.  Would he eventually talk?  The books on autism and the speech therapist seemed to say "yes" but we weren't so sure.

To add to our burden, our new-found expertise on the subject of autism meant we knew something wasn't right with Rémi, Gaston's little brother.  Rémi, pronounced "ray mee", was almost two years old.  He didn't answer to his name.  He didn't have any words.  Eye contact with him was rare and fleeting.  When we tried to have him diagnosed, it was relatively easy because we had just been through it with Gaston.  Also, the specialists who would perform the diagnosis knew that he had an autistic brother.  Autism is a genetic trait:  if a child is autistic, his siblings are more likely to be autistic.  Gaston's diagnosis was an emotional roller coaster.  Rémi's diagnosis was heart-breaking, but it was mainly a step in the bureaucratic process of getting funding.

When a paediatrician showed him how to feed a bottle to a baby doll, Rémi stuck the wrong end of the bottle into the doll's mouth.  This type of play, called inappropriate play, is a sign of autism.  Another example is how he aligns his toy cars in a row instead of recreating a city scene and making vroom-vroom noises.

Rémi's play was repetitive:  he could spend hours dangling a shoelace.  It was as though he was trying to thread the lace through the holes of my black Converse sneakers by gingerly lowering the tip of the lace into the hole.  This would never work, of course, and he would become frustrated to the point of having a tantrum.  If we tried to help him, his frustration and anger would grow.  He preferred being left alone, lining up his toy cars, sucking on blocks and dangling the shoelaces.  We were happy to leave him alone, because Gaston was full-on enough to exhaust all our energy.

One of the tips in one of my favourite autism books, More Than Words by Fern Sussman, is to interrupt the autistic child's lonely playing.  The exact words in the text are "if he's playing with a string, try pulling on it to get his attention.  He may get angry and push you away, but this is still preferable to no interaction at all."  That advice must have been aimed directly at Rémi and me.  Anne was in favour of just leaving him alone:  she was afraid we'd do more harm than good.  Vindicated by this piece of written advice, I gave it a try.  It worked:  I got tantrums at first, but eventually the shoelace-pulling turned into a game which made him laugh.

I knew on an instinctive level that the advice was right.  I get a little kick out of teasing my own kids.  My father was the same:  his idea of playing was often to annoy until he got some kind of reaction.  A lot of people do it to some extent.  Have you ever asked a five year old girl if she was married, just to see the surprised look on her face?  Or played "keep away"?

Who would have known that I was doing Rémi a favour by being annoying?  As he got older, I could interrupt repetitive, lonely play without hardly ever making him upset.  The latest is an elevator game, where he makes elevator door noises and slams his hands together in front of his face as though the doors were closing in front of him.  All I need to do is shout "Hold the lift!" or "Hold the elevator!" and stick my hands between his hands, and Rémi will start laughing hysterically.  I can even use the phrase "Hold the lift" to help him snap out of tantrums.  It makes him laugh almost every time.

The books and experts are full of advice.  The list of tips, tactics and tricks is overwhelming:  I can easily forget more than I can remember.  The secret is to immediately follow the advice which you instinctively know to be true, the sort of advice you would have probably followed even if nobody had given it to you.  In other words, start with the easy stuff.  Then, when you're ready, you can revisit the literature and decide for yourself what might work (not all of it will) and take on some slightly bigger challenges.