#NerdsUnite: Understanding Autism Spectrum Tests

What is the criteria for autism spectrum tests? Well, it’s not as easy as you would think and autism spectrum tests appear differently in boys than in girls. Autism spectrum disorder, or ASD, affects one in every 68 children and is much more commonly diagnosed in boys.

I received my diagnosis at age 37 … THIRTY SEVEN!!

The testing is wrong, and the system is broken.

So let’s identify “said brokenness” so we can do something about it!

Maestro …

Ever wonder why when you were growing up there were more boys than girls who were diagnosed as being autistic?

It wasn’t a gender issue, it was a testing issue.

New research shows ASD appears differently in females, and goes unnoticed or is misdiagnosed as something else.

I’ve had a nervous breakdown, “battled with depression,” anxiety and ADHD. The drugs for that included: xanax, klonopin, risperdal, seroquel, and EVEN LITHIUM!! Lithium was a trip, I heard my voice outside of my body and immediately stopped taking it. “Immediately” meaning calling my dr. and telling him I was coming off of it and needed guidance.

Undiagnosed ASD leads to depression, anxiety, and sometimes even (worse) suicide.

I KNEW that something was “off” about me, but I didn’t have the vocabulary to describe it.

Autism was never “on the table” in my mind.

I just assumed my pediatrician or school would have discovered it.

So, what is the criteria for diagnosing autism spectrum disorder?

Well, that’s a bit complicated.

ASD is a developmental condition marked by social and communication difficulties. It also can appear as repetitive inflexible patterns of behavior has been derived almost entirely from studies on boys.

The lack of data surrounding how ASD affects females has led to years of misdiagnosis and misunderstanding.

Recent studies show that even the way the brain processes social information is different based on sex.

Boys use certain portions of the brain to manage social situations and those regions are different than boys without ASD. Seeing “those parts” of their brain light up during social interaction was an easy way to diagnose them.

However, in girls with ASD, it’s not like that at all.

In a girl with ASD, her brain will light up in the same way that a non-ASD boys would.

That could be because girls do develop socially more quickly and intensely than boys.

Therefore, even if they’re somewhat held back in the area, it still wouldn’t be as severe as a boys would. Researchers believe that this occurs because of our sex hormones.

We’ve known men and women are “very different” but clearly this has not been investigated well enough yet.

ASD girls are much better at noticing and mimicking behavior. They naturally work really hard to appear completely normal.

To get diagnosed with ASD as a young girl, you would need to:

A) put down the mask (which is like a security blanket)

OR

B) continue to be social (which doesn’t come naturally to us as an activity).

Think of it in formulaic terms:

Connection = natural.

Social activity + x + y + I dunno what to do = CONNECTION.

I know that feeling connected is natural, I just had NO IDEA WHAT TO DO TO GET THERE!

ASD girls and females KNOW we are different.

The awareness is 100% there.

The WHY is what is hard. WHY am I so different!?!?

I really thought masking would somehow be this “magic pill” that allowed me to fit in with people.

It didn’t work!!

… and wahoo for that!!

Boys with autism are not really interested in socializing and when asked, they’ll say “they don’t care if they have friends or not.”

Yet girls do care about friends and connections, they are just confused as to how to go about it.

They are quickly labeled as “too much” when they share a special interest; or don’t understand how to process “normal” social cues.

Girls with ASD will also be viewed as “too much,” when they’re too sensitive or too rigid about their schedule.

FTR, I had a palm pilot at age 8 … it’s funny, but I’m also serious.

Studies show that girls with ASD will still engage in “very normal” play.

Instead of doing role playing, with dolls, they will just set up scenes that are visually pleasing to them. They don’t focus on the narrative or story of what is happening, just what feels good.

My continued “narrative” in barbie playtime was watching them have sex.

That was visually and physically pleasing.

This is yet another reason why ASD in females may go unnoticed so much longer. Parent’s don’t necessarily listen in on their daughters having play time with their dolls. If mine did, I might have ended up in some sort of behavioral class. Which I would then remind them that I’m the daughter of a Hoar (true story) so it’s genetic.

Many girls have been diagnosed with OCD, ADHD, and even anorexia instead of ASD like they should’ve been. Anorexia in the female ASD population is much, much higher than in the non-ASD girl population. They believe that many of the symptoms in profiles of the two diagnoses work together. The rigidity, focus, and detail-oriented nature shows in both ASD and ED identically.

Many people with ASD find certain tastes and textures of foods really disgusting. This can lead them to having a very restrictive diet. Now, they obviously do not think that all females with an eating disorder also have autism. The behaviors are just very similar and can easily be misdiagnosed.

Also why diagnoses and updating testing is important …

ASD women are also more easily to fall victim to exploitation and abusive partners. This is due to their literal and direct nature.

We are very aware from a young age at how hard it is to make friends. It doesn’t mean, however, we EVER stop trying!! This results in us (potentially) choosing partners that give us attention that isn’t kind or loving.

Now, I have a “people fail safe” that I go through when allowing someone to get close. It’s how I caught my first con-man!! (Well technically that was because of synesthesia – but it worked!!)

Overall, remember that every diagnosis will be expressed and even feel differently to each person who has it.

And that’s what makes us special.

Very … very … special.

Seriously, if you or someone you know is struggling with either their diagnosis, or isn’t diagnosed … please reach out. Email: jen at talknerdytome dot com. Twitter here. Facebook here. On the Gram here.

You may have felt like an alien your whole life, but trust me … you are not alone.