Hi, My Kid Has Autism…

Happy Holidays! I have been struggling with something that many special-needs parents might find disturbing:  admitting to others that my child has autism.  Don’t get me wrong—I am a fierce autism advocate—just ask the many teachers and providers that I’ve had to set straight.

As discussed by many experts, my husband and I informed our closest set of family and friends (e.g. aunts, uncles, cousins, etc.) of our son’s diagnosis of Asperger’s syndrome.  Many of these people were not surprised:  they’ve viewed his behavior on a consistent basis.  Some studies have suggested that parents of children with autism were aware of developmental problems as early as 18 months.  It may be the same with extended family and friends. 

My problem is that loose, sporadic set of relatives and acquaintances.  My reason:  Ignorance.  For instance, I recently admitted to a longtime friend that my son had been diagnosed. After well-meaning platitudes (e.g. “sorry to hear that”), she said that he would "grow out of it."  This isn't measles or mumps.  No, it is a lifelong condition, I replied hastily. 

A direct and frank proclamation may be beneficial for some children with ASD.  For instance, in the book, Coming Out Asperger, Dinah Murray writes, “Having an authoritative diagnosis and disclosing that diagnosis have tended to be the keys to unlocking resources, and so hard disclosure is sometimes essential for practical reasons.”

Also, some past research suggests that disclosure affects how children with autism are evaluated by other people.  Adults viewed a child’s behavior more positively when identified as having autism, according to a 2008 study published in Journal of Autism and Developmental Disorders.  But the results depended on the type of behavior shown. 

Still, hard disclosure does allow the opportunity to get it all out there.  These are my strengths and weaknesses—just like everyone else.  It gets complicated as my son grows older (e.g. classmates, romantic ties, work, etc.) and the choice becomes his, not mine.

Applied Behavior Analysis: Achievement versus Actual Fact

In the Part three installment of their series on autism, The L.A. Times continues exploring facts and misconceptions surrounding the neurological disorder.  This time, writer Alan Zarembo focuses his lens on applied behavior analysis (ABA). 

Some autism experts question the cost, intensity and effectiveness of the therapy.  For instance, autism specialist Dr. Bennett Leventhal of the Nathan Kline Institute for Psychiatric Research in Orangeburg, N.Y, notes in the article that “in rare cases an autistic child receiving therapy can improve enough to pass for normal.

But others who are deemed recovered ‘probably never really had autism in the first place,’ he said.”

There are some studies that suggest that not all cases benefit from ABA.  Children with autism spectrum disorder didn’t improve from more intensive ABA programs compared with targeted or less intensive programs, according to a prospective study published last month in Research in Developmental Disabilities.

Currently, my husband and I do not—I repeat—do not use this therapy for our son.  However, I agree with the assertion that there needs to be an alternative to ABA, particularly in severe cases of autism.  As a special-needs parent, it makes me nervous putting all my eggs in one basket, especially if that basket springs a leak.

But there are some parents who rely on ABA just to make it through the week.  There isn’t a 100 percent success rate on any therapy for autism.  There can’t be for a disorder that is still in the early throes of research and treatment. 

It sucks that some of us may get a “typically” functioning child and some of us may not (sorry, I don’t believe in total recovery).  But I believe in the right to try anything to reach your child.  I believe fighting for any potential therapy so that child can hold a gaze longer or say, “I love you.”  And as a special-need parent, I will go to war with anybody who tries to bar me from that right.

Autism Not a Boom, But A Life for Some Families

The L.A.Times recent Part 1 article in their series on autism has stirred the debate further on children who meet the criteria for the disorder.

The article shows how some parents prefer the diagnosis of autism spectrum disorder for ensuring services for their children.  For instance, Laurie Bailey notes that she didn’t feed her three-year old son, Benjamin, breakfast on the day of his evaluation, in order to “stack the odds in our favor.”

As a parent, there is nothing more heartbreaking than hearing, “There is something wrong with your child.”  My husband and I first heard the word, “autism” when the speech pathologist for our then two-year old son, off-handedly asked me during a phone call, “Do you have relatives with Asperger’s syndrome?” Shocked, I quietly answered, “No.”

At that point, our son had displayed classic signs of stimming:  he routinely walked the length of the room back and forth; he would fixate on spelling certain words like “mat” for long periods of time to the exclusion of other activities.

But my husband and I just thought these were eccentric nuisances that our son would outgrow.  We thought he was brilliant—despite a speech delay—our son could read at two-years old.

So when our speech pathologist introduced that word, we went into full meltdown.  “What is she talking about?!  How freaking dare she suggest that?!”  (Legally, a speech pathologist cannot give a clinical diagnosis of autism).

It took two additional years of other “eccentric” behavior including difficulty interacting with other age-appropriate children, recognizing certain facial cues, engaging in imitation play, fine motor skills, auditory sensitivity, etc. before we embraced the official diagnosis from a developmental pediatrician.

The suggestion that parents are hunting for diagnoses in order to bilk federal and state agencies is insulting to special-needs families.  The lifetime costs of caring for an individual with autism spectrum disorder is approximately 3.2 million. Families with a child with ASD reported an average loss of 14 percent of their annual income, according to a 2008 study in the journal Pediatrics.   

These children will grow into adults navigating the same pitfalls of life that neurotypical children do such as bullies, failed romances and job layoffs.  These needed services provide the armor that fully-equipped NT children take for granted, not an advantage.

Still, discrepancies exist in diagnosing the disease.  For instance, in a joint study published last month, researchers at Weill Cornell Medical College found that there were site differences in best-estimate clinical diagnoses for children with ASD.  Other factors affecting treatment and diagnosis include ethnic and socioeconomic status.   

So let’s hope that the next phase of autism research and treatment includes sensitivity training for those ignorant of the daily struggles of special-needs families.