Commonly Asked Questions

I talked yesterday about not being afraid to ask parents with autistic children questions; today, as the man of the hour is actually home "sick" and watching Veggie Tales next to me on the couch, I am going to answer some of the most common I hear.

"What is autism?"

This one is getting asked less often as the condition is becoming more...I hesitate to say it, but well--popular. It has become somewhat the disorder de jour. I am going to cover it first anyway to dispel
misconceptions and set a basis for the rest of the questions.

So, autism is something called a developmental disorder that is characterized by impairment to social function, sensory interpretation, and communication skills.

Basically it means that while still in the womb, Gabriel's little fetus brain developed differently than the norm. Look at it kind of like the difference between a Windows operating system versus a Mac OS. He, the Mac, is still fully functioning and in fact may do certain things better under the right circumstances. For the long-term Windows user (you), it takes a bit of a learning curve to figure out how the Mac works.

Autism is not a disease--Gabe is not sick, he is just different.

"How old was your child  when he was diagnosed?"

Easy one--though in retrospect, Gabriel was autistic even as an infant, the discrepancy became more pronounced the older that he got. Around 17 months we started the process of trying to discover exactly what was different; at 30 months (two and a half years) he was diagnosed. Six months later, we got it reconfirmed with another diagnosis.

"How did you know he was autistic?"

Most people that ask this have the underlying fear--"How do I know if MY child has autism?"
Obviously most of the parents you are going to speak to if you have growing concerns are not going to be doctors or diagnosticians. We cannot tell you whether or not your child is on the spectrum; you would have to talk to your pediatrician about that. Others are just curious. Either way, it doesn't bother me to answer.

One of the biggest first indicators is failing the M-CHAT.

The M-CHAT is the Modified Checklist for Autism in Toddlers and it feels like it is being given more in pediatrician offices. I also have not had an infant in three years, so it may have changed since then, I don't know. It is a questionnaire that might indicate whether you should seek further testing. It does not alone determine whether or not a child is on the spectrum.

With Gabriel, he started having what his daycare referred to as "staring spells"--he would stare off into space, unresponsive to outside stimuli. His teacher would try rubbing his back, snapping in front of his face, calling his name, and many other ways to get his attention, but he would show no sign of awareness or acknowledgment. Words that he learned would be used for a brief period of time, a month at the longest, and then would disappear never to be used again. Walking, he could not get more than a few steps before falling down.

As this blog followed on that journey, I won't recount it all here, but the next year was filled with visit from Early Childhood Intervention specialists and therapists, and visits to a neurologist, allergist, ENT, psychiatrist, audiologist, and finally a developmental pediatrician. Through a barrage of tests all the conclusions were the same: Gabriel had Autism Spectrum Disorder, moderate to severe.

"What determines severity?"

Though there is probably a significant amount of consideration that goes into determining severity of the disorder, Gabe's was actually pretty easy--he is non-communicative, which automatically puts him on the severe end of the spectrum.

"Are you sure it is not Asperger's?"

Yup.

There was a more defined separation between the five (yes, five!) "flavors" of autism, but there was a great deal of confusion still lingering so they did away with the division in the new diagnostic criteria.

Asperger's IS autism.

The determination between Asperger's and autism is that Asperger's does not present with a significant speech delay.

Individuals with Asperger's will still experience any mix of the characteristics of autism, including (but not limited to): limited interests, repetitive behavior, ritualistic behavior/strict schedulers, or difficulty with social skills.

Gabriel has a significant speech delay (he is completely nonverbal), so he does not have Asperger's.

"But he is so....!!"

Normally, I hear (even from licensed medical professionals), "But he's so affectionate!!!"

It is true--I have been blessed with one of the most loving little critters to have ever walked this green earth. Gabriel loves kisses and cuddles, and Lord knows the boy has never met a stranger.

Story time: One day I was at the grocery store with the boys clipped into one of those large carts with the plastic seats in front. I was price comparing when I hear a squeal behind me; Gabriel had wrapped his arm around some pretty little twenty-something and pulled her into his lap. (The whole aisle laughed and applauded, and the young lady was very understanding while Gabe suggestively laughed.)

I can't deny that he is made out of snuggles and hugs. He also makes pretty solid eye contact, eats a wide and healthy variety in his diet, and has never lined up a single toy in his life.

We get it into our head this image of autism--we are visual thinkers and our brains offer up any associated topic when tagged, from the neighbor's autistic son to "Rain Man". That image doesn't allow much room for the reality that autism is a spectrum disorder. You can have as little or as much as you have and still fall under the umbrella, as long as you meet pieces of each criterion of diagnosis:

Social impairment, communication difficulties, and repetitive behavior.

By that reasoning, Gabriel who cannot regulate his emotions or interact with peers appropriately, cannot express his needs in a way to get them met, and watches the same ten seconds of Veggie Tales over and over and over again for all of his existence...Gabriel is autistic.

"My child wanted to....and he's not autistic."

It feels like a fine distinction, I know it does. Your little girl wants to watch "Frozen" four times a day every day for a year; your son will only eat fish sticks and mac and cheese. What makes that normal child behavior and Gabriel's not.

As I said before, it does roll into more than just the one category--in this case, your child is demonstrating repetitive behavior or limited interest, but they are speaking just fine and they have a gaggle of giggling friends at church and school.

You kind of have to hit the trifecta in order to fit in the ASD realm. I don't want to dismiss your struggle or frustration--heck, I have on more than one occasion thought about whizzing that iPad out the window if I had to hear "Jingle Bells" played one. more. freaking. time. I can sympathize with you!!

Humanity is a bit of a spectrum disorder; idiosyncrasies or eccentricities don't make you autistic. It just makes you..."you" :)

"How are you doing?"

I'm good; how YOU doin'? ;)

Ah, I'm just kiddin'. The reason I included this question is because people honestly want to know how we are coping. I mean this whole thing is painted like a total horror show.

On the one hand...yeah, it kinda feels that way some days.

We all know the divorce rates for autistic parents (80%) and there is the study suggesting that parents of autistic children experience stress levels comparable to that of combat veterans. It is HARD, man. It is actively dreading the full moon or cold fronts blowing in, a never-ending barrage of therapists and doctors visits, a pharmacy's worth of medicine that cause frankly terrifying side effects, and situations you couldn't have even dreamed you would be dealing with. Nights where you get little to no sleep that last for months or years at a time. Heartbreak as you watch your child wanting to be included and belong, and just not being able to say anything. The nugget of fear that he has reached his peak, and that this...it isn't going to get any better.

Then you look at him.

His cheeks that still have that delicious baby chubbiness and his Mowgli shaggy hair-do (he isn't going to let you cut it, after all). You see him run into class and give his teacher a big hug around her neck and see him put his hand on a friend's shoulder. Hear him call his OT "baby", which makes her laugh and spin him around. Watch him rewind his show so he can hear "God made you special. And he loves you very much." again and again as he falls asleep.

Guys, I gotta tell you--Gabriel is amazing. He is so smart that if he brings you a tablet that has low battery, he'll bring you the right charger, too. If I am upset, he is sensitive enough to wait until I slow down to give me the tightest, strongest hug. And his patience! Benjamin will antagonize his brother from the moment he gets up until he goes to bed at night, and time after time, Gabe just kisses Ben's hand or on his head  and walks away.

I love Gabe, just the way he is. He is just awesome for any person, autistic or not. I dare anyone else to meet him and not to love him, too--there hasn't been a single person yet that hasn't liked him, even at his worst.

So, how  am I doing?

I'm doing really, really great. Thank you for asking :)

--Andie

Abnormal Life

My dear, sweet cousin was asking questions last night about what autism looks like from a very clinical standpoint--how severity of condition is determined, what autistic adults are like, how I feel about having an autistic son, things of that nature.

I can obviously not speak for every parent that has a special needs child, but for the most part (unless you catch them on a very bad day):

We are happy to answer questions.

I'm not sure if they are afraid of prying or being insensitive, if they will appear foolish for not knowing, or that it might be inappropriate, but for whatever reason, people in general are interested but nervous that they are going to offend us.

It is okay to be curious!

Someone along the way, society as a whole were encouraged to not ask questions. Better to stay silent and all that.

But for me personally, and for almost all the other parents that I have encountered, go ahead and ask. It is not only okay, it is kind of touching--you care enough to learn more. You are thinking. We want people asking questions because the more that know about my child, the less excuses I have to make to those ignorant few, the less apologies I have to make for behavior that requires no apology, and certainly no shame on my part.

I do feel shame, however. The longer I go, the more callous I become to the judgment of strangers. If singing Billy Joel's "The Longest Time" quite loudly at Walmart keeps Gabriel focused on me instead of how horrible the whole grocery shopping experience is (don't worry, buddy--I am right there with you), then that is what I am going to do. Most people understand, and nuts to the ones that don't.

It is hard sometimes, though. Specifically, I feel so ashamed when my vigilance lapsed for a second and something unpleasant or unsafe happened that I knew I could have prevented. If only I hadn't been...catching up with a friend, paying attention to another child, drinking my coffee, trying to do... really anything else.

That's the sting there, isn't it? Having an autistic child is never looking away.

It's like when your baby is just starting to toddle around--the world is full of dangers you are painfully aware of and even a moment of inattentiveness, and they are jamming toys into electrical outlets and swallowing coins and conceiving a hundred different ways to cause themselves bodily harm in the name of exploration. A kid on the spectrum, you sorta feel like they never grow out of that phase.

Don't get me wrong: I am not looking for sympathy. Often, I think people expect...maybe that I am disappointed with my son not being "normal".

(Aside here: in the world of ASD, we don't use the term "normal" because it implies that my child is not, in fact, normal. The appropriate term is "neurotypical" because it specifically conveys the distinction--my son's brain developed structurally and functionally in a way that is different than most children's do.)

I am not sad. Does not offend me--you can ask. No, I am not sad. We all have our struggles, and this is what Gabriel's look like. I like Gabriel. I think he's neat.

Would it make my life easier if he was not autistic?

That is a hard question. For one thing...not actually sure myself. I had three c-sections and have never gone into labor, so I can't tell you much about natural delivery. It is the same principle. About my life and my struggles, I can tell you a great deal; but I don't know what it looks like from individual perspectives, in other families.

Personally, I do not think it is easier to have neurotypical children, or harder to have autistic children. Difficulty is determined by personal thresholds--what you can handle, what you cannot, what makes you sad/mad/frustrated/stressed/miserable. There are parents out there with a severe aversion to fecal matter. God help me if I had that problem because raising kids is like 90% other people's crap.

That is my personal view point though. Please don't go up to a mother with a special needs child with the impression that she is not struggling. I guarantee you that she is struggling. Take my words to mean: you don't know how people are coping, so don't bring any preconceived notions. Don't judge her...but you don't need to pity her either.

The next post, I will actually answer some of the most common questions I get so that if you are still feeling some apprehension over speaking up, you can get some answers.

If you have any thing you have specifically been wondering, reply and I will include that next time.

Until then!