AUTISM AND THE TIME MACHINE

I've been doing this Speech-Language Pathologist (SLP) thing for a while.

Quite a while, actually.

Cue the Flashback!

It was the '80s. The city was New York.

After finishing up at Columbia University's Teachers College, I took a Clinical Fellowship assignment doing Early Intervention.

It was an exciting first job, for sure, but it meant I had to borough-hop all over NYC.
 
Since I was a newbie, soaking wet behind the ears, my caseload - especially with all the subway travel - seemed daunting.

If memory serves, and more often than not these days it doesn't, I was seeing around six students a day.

So this bright eyed neophyte with what felt like a 3-ton therapy bag, was servicing approximately thirty 0-3 year-olds a week.  Yikes!

To be honest, I can't recall any of their names.

Except for one. 

Luke.

Luke was my first autistic client.

He was three years old, and newly diagnosed.

This news was overwhelming to his nurse/mom and firefighter/dad who, with two other kids also under the age of 5, already had their hands full.

They weren't the only overwhelmed ones.

Add me to that list.

As you would expect, my first session with Luke was a total disaster.

In addition to being  nonverbal, this little guy had some extremely significant behaviors.  

Having been plucked from the Columbia frying pan and dropped directly into the Speech-Language Pathology fire, I was more than a little unprepared when, in that first session, Luke ran out of the living room, made a beeline for the kitchen, and repeatedly banged his head on the refrigerator door.

While he was hurting his head, it was clear I was in over mine.

It took a half dozen sessions, a lot of perseverance, and some divine intervention from upstairs, but eventually I established enough of a rapport with this little guy to work with him.

Back then, very little was known about autism. It was an era when parents (and freshly minted SLPs) had almost no information about what it was, what caused it and what were the best ways to treat it.

In the 80s, it was estimated that 1 in every 2,000 children had some form of autism. I'm certain the incidence was much higher, but the screening process was neither as sophisticated nor accurate as it is now.

And children were almost never diagnosed before they began school.

Luke was a fortunate exception.

(By comparison, recent CDC stats claim that 1 in 59 children is diagnosed with autism.)

The testing, scrutiny and research just didn't exist then.   

So why bring this up 3 decades later?  

Because in some regards, the more things change for the better (superior diagnosis, treatment and support), the more some things stay the same.

Like making information about HOW to get services readily available to the parents who need it most!

Case in point.

Last month my husband Peter and I attended, as we do every year, the Sensitive Santa event at the We Rock the Spectrum Kids Gym in Tarzana, CA.

This is a wonderful event hosted and spearheaded by the indomitable Shannon Penrod and Autism Live.

WRTS is a brilliantly-conceived gym franchise where children on the spectrum for autism can run, zip-line and jump in a safe, nurturing space.

Shannon and her hubby dress up as Mister and Mrs. Claus, and their son, Jem, is the Elf-in-Chief.

Children from all over Southern California drop by to get a wrapped gift from Santa, who is sequestered in a quiet, calm area at the back of the gym.

It is no small deal for an autistic child to actually go sit on Santa's lap and take a present from a stranger in a bright red suit. This seemingly simple experience is anything but for a lot of these kiddos. The experience can be frighteningly overwhelming.

Many a parent leaves the Sensitive Santa event in tears after witnessing their child spend some time with the dude in red, having had this major holiday breakthrough.

It never fails to give us the major feels, and I'd be lying if I said I didn't get emotional watching kids faces when they open any of our sensory SmartFelt Toys we're happy to donate.

It's a real thrill.

This Christmas, I had the opportunity to meet several moms who'd come to Sensitive Santa with their kids. And one recurring question, indicative of a universal issue, really resonated with me.

"How can I get my kid the proper speech therapy service he needs?"

One mom told me that her nonverbal 8 year old is only authorized to get 15 minutes of speech a week.

A WEEK!

For reference, in my sessions, when I'm working with a kid (whether they are differently-abled or not) it usually takes at least 15 minutes just to get them to settle down. Then we can start our work.

So how useful is 15 minutes a week? Answer: it's not!

Another mom told me she was informed that her autistic daughter doesn't qualify for speech services. In other words, she'd been given the ol' administrative brush off.

Based on what I was told about this girl, not only should she qualify for speech therapy, but she desperately needs it.

Both of these ladies felt defeated, and totally lost.

And these conversations felt queasily familiar.

It was as if I had stepped into a time machine, turned the dial back to 1986, hit ignition and got whisked back in time.

Suddenly, it felt like I was chatting with Luke's mom all over again.

These mothers were equally at their wits' ends, alone in the wilderness, and not sure what to do to help their kids.

They just knew they had to do something.

How on earth is it possible, with all the information out there, that 30 years later, many parents still can't get proper services?

Well, often times they have to enter a David v. Goliath battle with budget oriented schools and school districts who want to avoid having to pay for services at all costs. I'm not saying they're cold-hearted bottom liners who don't care about kids.

They're probably just cold-hearted bottom liners.

Without the proper advocacy, it's truly an uphill battle.

And this is where we, as SLPs, can be a real help.

I have found myself many times sitting in tense, sometimes confrontational rooms next to nervous moms where I was asked to advocate on behalf of kids who need speech and language services.

Despite the death stares and corporate stink eye from school bean counters across across the table, who would prefer I either muzzle up or - better yet - be on a beach somewhere and unavailable for the meeting, I always feel morally obligated to give my professional opinion.

And if I think a child could benefit from more services, well then I will make that point as strongly as I can.

If I feel a child is getting enough services or has made significant enough progress to move on, I'll declare that too. The last thing I'd want is for a deserving child to be denied services because they were going to someone who really doesn't need them.

It's about being honest. And sensitive to the true needs of little ones.

Of course there are myriad Autism Resource sites around the country and depending on where a parent lives, they can reach out and begin a personal search for advocates.

The autism resource community is a supportive one. They want every child to get the support they need.

In fact, after I told Shannon Penrod about these conversations, she immediately wanted me to put her in touch with these women, so that she could point them in the right direction. That's the kind of spirit and support within this community.

As for my fellow Speech-Language Pathologists reading this, if you see that a parent is distressed about a lack of services, or you see a situation where you think a child could benefit from further assistance, jump in and help.

You may not make a lot of friends at the school board...but you'll sleep like a baby!

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