I have a phobia.

It’s bigger than my fear of bridges.

It causes me to micro-manage and over-analyze, to obsess and to doubt until I retreat from the world; talking myself in circles until the anxiety, the guilt, and the shame destroy me.

There are times that I have doubted that Everybody’s Boy has Autism.

I nearly vomited writing those words.

Because the fear, the one that is worse than the tallest bridge?

It’s the fear of being a fraud.

Image is not everything.  It’s only half of everything.  Integrity – that’s the other half.

When he was diagnosed -in the beginning - I didn’t doubt.  I couldn’t.  It was so glaringly obvious, so black and white, that I could do nothing but see the Autism.  I remember that with the diagnosis evaluation, someone accidentally included the “CARS” score-sheet which said in bold across the top (For Diagnostic Purposes Only – File) with the handwritten post-it note that said “don’t copy, not for parents”.  The sheet had a scale at the bottom.  Everybody’s Boy had scored “moderate-severe”.

When I caught my breath after reading that I put it back in an envelope and returned it to our case manager.  I made a copy first, for the binder.  It was too late, the “damage” had been done.  I’d seen it.

Though I never saw my son through the lens of profoundly disabled.  He wasn’t.  He isn’t.

Instead we fought to implement a regimented early intervention schedule.  We have maintained speech, occupational therapy, and developmental therapy for three and a half years.  We were fortunate enough for him to experience a focused early intervention program through the school system.

We have constantly seen forward progress.

He was practically nonverbal until he was 3.5.  Now his vocabulary is more extensive than a majority of his peers.  While it’s too soon to officially make the call, I’m fairly certain that no one would argue that his cognitive ability is (at least) average.  He reads.  He can understand general scientific and mathematical concepts.

How dare I say my child has Autism?

How can there be such an expansive Spectrum?

I hear the term “mild autism” from time to time.  It seems such a misnomer. How does one have “mild” Autism?   I posed a similar question to my friends on Facebook recently (in reference to a comment on “slight autism”) and one replied that was like being “slightly pregnant”.

So I wondered if possibly parents were trying to play down their child’s Autism with these terms?  Or if doctors were using it as a descriptive (kind of like how ADHD became almost cliche’ in the 90′s) to explain a set of characteristics? Or if perhaps some form of “mild autism” that I’ve never seen before does exist- and seemingly affects a good deal of the population.

For years Everybody’s Boy’s therapists and my friends who work in the field have tried to explain Autism to me.  For years I have nodded that I understood because I couldn’t imagine admitting my stupidity to the most patient people in the world.

But I get it now.  I get it and I want to shout it from the roof-tops.  I understand! All it took was an everything bagel and a memo pad.  I just needed a visual and a carb.

I am not a fraud.  

All the people who have worked with my child are not totally wrong, or worse trying to appease my neurosis by treating my child for a disorder he does not have.  (Did I mention that I have analyzed this to death?  I wasn’t kidding).

It’s my duty to share this.  Because I am not the only person who goes through this doubt and confusion.  If I were – the picture on the memo pad would not exist.  Some one drew it for another crazy mom, and then another and then another and…  Hell, some PhD probably drew it to visualize it himself.  You know that guy who invented Autism?  Yeah, this has probably been around since him.  It’s just getting to the people.

In my case, it was courtesy of Katie Brady, Autism Whisperer Extraordinaire. If you live in the Triangle area of NC, and you have a child with Autism (and for real – you do – even if he talks) you must see her, just don’t take our time slot, yo.

Are you ready for it?  Shared, with Katie’s express permission, is the memo pad drawing that saved my freaking sanity.

Here it is.  Scanned with greatest care.  It’s being returned now to the platinum document frame with bullet-proof glass where it shall remain for all eternity.

Cause this picture is my peace of mind.  This picture helps me understand Autism, but also my son.

Before I explain this, I must explain High Functioning Autism vs. Low Functioning Autism.  This is very important because people, inside and outside of the “community” really misunderstand these terms.

High Functioning Autism simply refers to an individuals cognitive functioning (IQ).  If you have a normal or greater IQ and have Autism you are considered “High Functioning”.  Conversely, “Low Functioning” simply refers to IQ as well.  An individual with Autism who had also had an intellectual disability would be clinically diagnosed as low functioning.

The terms have nothing to do with how one functions in life.

Autism is a social, emotional, and neurological disorder.  Those are the primary markers.  Most people with Autism also have Sensory Integration Disorder (or whatever it’s called this week) meaning that they over or under-register sound, touch, movement, textures and visual stimuli.  They also, often have coordination and motor planning (dyspraxia) issues.  For example, EB took a lot longer to learn how to use a fork (he was almost 4) and his balance is still off.  He also has core strength issues due to low muscle tone (hypotonia).

These things are very common on the Autism Spectrum.

Right, so back to my “precious”.  The drawing that gave me my “aha” moment.

You’ll see there are four quadrants, divided by a horizontal line in the center with the far right being high “IQ” and the far left being low “IQ”.

Politically I resent the assertion of anything on the “right” being representative of high IQ, but it’s a picture so I won’t read too much into that.

The vertical line down the middle that intersects (bear with me I didn’t learn the fancy words for this stuff in “Applied Math II”) illustrates “A lot of Autism” at the top and a “Little bit of Autism” at the bottom.

In layman’s terms, how much the person is affected by Autistic symptoms.

We’ll start with the lower left quadrant.  This individual has an intellectual disability and a “little bit of Autism”.  This person might be calmer, more social, and less rigid than other’s with Autism – yet still on the Spectrum because they have the trademark Autism symptoms not found in the general population.

Then we have the upper left quadrant.  This individual has an intellectual disability and a “lot of Autism”.  They may be unable to communicate verbally, may have self-injurious behaviors, and extreme rigidity.

Let’s go to the lower-right quadrant next.  This person has average or above average cognitive abilities.  Often they are socially awkward or “quirky”.  They might have fixed interests, but can function fairly well in society.  These are the Bill Gates kind of leaders we see that are likely undiagnosed (or maybe they are the “mild-autism” people) or possibly even labeled with Asperger’s syndrome.  They are mildly affected by their Autism but are high-functioning enough to gain and retain the skills they need to function with little support in society.

This brings us to the upper right quadrant.  These individuals have average to above average cognitive abilities but they also have a lot of Autism.  They might have extreme difficultly socially and with emotional regulation.  They may be very rigid in their ideas, coming up with very creative schemes but have a very difficult time including their peers in this play.  They may struggle when things don’t turn out as they anticipate, or are different than usual.  They may be rigid in their interests to the point of obsession.  They may also become frustrated and exhibit self-injurious behavior.

Everybody’s Boy is in the upper right quadrant.  While he is not cognitively impaired, he does struggle immensely with social situations and emotional regulation.  Tasks like potty-training and putting on socks have been extremely challenging.  These things must be taught and they must be taught in a way that makes sense to him.

Often it is said that people with Autism “think in pictures”.  Many famous people with Autism have said so themselves.  Temple Grandin even wrote a book called “Thinking in Pictures”.

While I don’t consider myself one who thinks in pictures, I definitely have a strong visual component related to my comprehension of abstract ideas.

It all came together for me.  Not that I understand Autism one bit more than I did a week ago.  But I no longer doubt my child’s struggles are directly related to Autism.

I also see clearly the danger in having unrealistic expectations of individuals in the “upper right quadrant”.  Autism is, oftentimes, the invisible disability.  It’s easy to see a child who is verbal and capable of working at grade level and label their social and emotional struggles as “behavior” problems.

For us, we are fortunate that from the time EB was a baby and my loving mother-in-law noticed the earliest signs to our fortune of ending up in an area rich in resources for and education about the Autism spectrum.

So many people have invested themselves in the story of Everybody’s Boy.  So many people have given their time, money, and hearts to our family.

It’s no accident that I named our story Everybody’s Boy.  In part, because Autism can touch everybody’s boy (or girl) but mostly because each person that has touched our lives is in some way responsible for our child’s success.  His story, his life, his success – all a product of the ‘it takes a village’ philosophy we embrace – means he is intrinsically linked to every person who has touched his life.

After having been given so much, it’s only right that I share (on the rare occasion) that I gain knowledge.

I hope that there is someone out there that needs a graph just as much as I do.

I hope that person is reading this blog.

But most importantly, I hope that person will share it with their friends, family, teachers and professionals.