5 Reasons It May Take Years to Diagnose

This is a fantastic article from a fantastic website. Please take the time to read it first. The article brings about a lot of great points. The website where it is taken from, About Health, also has many other useful resources on autism as well. I suggest you check it out!

5 Reasons Why It May Take Years to Learn You Have High-Functioning Autism

Here is my take on the five reasons and how it fits into where I fall on the spectrum. 

1. Higher intelligence and language skills may have masked certain symptoms.  The ability to do well in school, communicate effectively, and pass an IQ test with flying colors are all impressive — and may set parents and teachers down the wrong path when looking for reasons for a child’s unusual issues or behavior.  Even general practice pediatricians can miss signs of autism when a child is able to communicate intelligently using spoken language. In some cases, kids’ strengths carry them through early elementary school with only minor issues, but become serious concerns when schoolwork becomes more abstract, demanding, and verbal — and when social interactions become more complex.* 

I did well in school, but it wasn’t until college that I took tests that showed a higher level IQ. Whether I am gifted, above-average, or average depends entirely on the test and the compartmentalized content. Elementary school is a blending of many areas and many subjects. In a wash, it can be hard to determine that there are areas abnormally high. When I was younger, nothing set me out of the ordinary. Intelligent and creative kids are a dime a dozen and I was never remarkable enough to cross the line into, “There is something not typical with this child.”

The skill sets that I do have that could be considered “gifted” are very isolated and I didn’t discover until college when subject area and skills are compartmentalized.

Here is one example of an isolated area: Growing up, I didn’t like math. I always thought it was hard and preferred language arts where I excelled. All my friends were the “smart kids” and in junior high, got to skip into the “smart kid math.”  I was not able to. Although A’s and great scores, the scores just weren’t high enough. I always presented as a sweet kid who was naturally creative, great at literacy, and who worked hard at school in order to succeed in areas like math–intelligent, but nothing above the norm.

It wasn’t until college that I realized I’m actually very good at math, like really good at it. ??? Where did this come from? The math course I was taking was purely logic based. I sat in a class with 50 other people who were scratching their heads beyond frustrated because it wasn’t the normal math they were used to with solving equations and learning algorithms, and I effortlessly excelled.

I easily solved problems in which no one else was able and presented them to the class. I unknowingly separated myself from my group of friends in my field because I would end up tutoring them. About to throw their textbooks out the window spending hours on the homework, I could come in without a care in the world and show them how to solve the problems they had deemed outrageous and unsolvable. I also didn’t share their communal gripe and frustration with the course, I thought the math was fun. Apparently that can matter to a group of girls. And I had learned very early on through high school to dumb myself down to match my friends. When I felt comfortable in something or no longer felt the need to dumb my abilities, an unspoken shift would happen among certain girls. I was breaking the established status-quo of not being better or smarter than them in this area. And they did not like it. I was the non-threatening friend that made them feel good about themselves. The side-kick needs to stay the side-kick. Or at least, needs to only stick to the already determined areas of success.

In college, it also became apparent that I could set the curve on tests, many of these tests I did not even study for. One official test to receive my certification was marked as particularly hard. Many of my peers had to spend the $100 and take it multiple times. At the testing center, I uneasily and nervously overheard the conversations nearby of my peers saying it was their third attempt. When the test books were passed out, I discovered I had not studied for this test. I had studied for the wrong test. Everyone around me had a calculator on the table and I didn’t even know there was math on it! Well, I took the test expecting to fail. Turns out, I didn’t just pass. I placed in the top percentile out of all test-takers spanning four states who had taken it the year before. And this was with doing the timed math portion without even a calculator. I received an award in the mail and brought it to my university expecting them to be familiar with it from all the hundreds of students they see passing through each year. But, they had never seen it before or knew it existed either. And the two other peers assigned to my site, had to delay their internships to pass the test.

But, at the same time, in high school, my SAT scores were hardly admirable. Barely above average, I took the test three times to try to make it match my stellar GPA. I even took the alternative ACT and both showed slightly above-average scores. Many kinds of tests are hard for me. I over-think, I over-analyze. If the test situation in college happened earlier on in life, it would have caught the teachers’ eyes. But none of the tests and broad content in elementary school clicked the same way as it did in the format the colleges present them.

2. The individual may have been born before the diagnosis of Asperger syndrome or high functioning autism was included in the diagnostic literature. There were plenty of kids with symptoms consistent with HFA before 1988 when Asperger syndrome was added to the diagnostic manual along with other “milder” forms of autism.  These folks may or may not have received a diagnosis of something other than autism (autism would have been far too extreme a diagnosis for a high functioning individual) — and they may never have thought of seeking a new diagnosis as an adult.*

My birthday teeters around this cut off point. But even with all the knowledge in today’s classrooms, I don’t think I would have been noticeable. There were a few quirks, like a student-teacher asking me why I didn’t look visibly upset in school after my grandma had died, but not enough of them that would standout of the normal awkwardness of childhood.  I was an expert artist at flying under the radar in all areas. Even in elementary school, I dreaded cutting my hair because of the attention it brought the next days. Although positive, I hated the attention. I flew through everything making sure I matched the exact norms at all times.

3. The individual may have developed means to hide, manage, or overcome his or her symptoms.  People with high functioning autism are, by definition, of average or above average intelligence.  If they are told often enough to make eye contact, stop rocking, flapping, or talking about the same things over and over again — they are often able to either hide, control, or actually overcome the need to present overt symptoms.  When that happens, the obvious external signs of autism are not present, making a diagnosis very tricky indeed.*

YES. The biggest reason. A glance of the eye, a look, anything, and I just learned it’s not appropriate to wring my hands in public and I will work very hard not to do that.

After discovering I have Aspergers, I was in a situation similarly described as my post here. I thought, “Why not? I already feel like my skin is crawling and I want to die. Might as well try this stimming thing,” and I began tapping and rolling my foot systematically. And it worked. My anxiety and the level of unbearableness in the room decreased. If anything made me feel weird about myself with this diagnosis, it was discovering the stimming that really set in and made it feel real. I never would have found out that stimming works for me because I learned early on that you sit still and sit appropriately.

However, I do notice that when in private and “thinking” or stressed, the routine shaking of my hand is considered a stim. I wouldn’t have ever done this in public because it would have drawn eyes and been considered weird. But naturally, I have been doing it on my own.

Luckily, there are stims that can be socially acceptable like the subtle tapping and rolling of your foot. Kids with stims like flapping can be taught more socially appropriate ways to stim. Asking to stop completely, is like asking to take off a bandage to expose a festering wound to the wind. If you take a stim away, it’s got to be replaced.

4. Some research suggests that women and girls are under-diagnosed with autism.  While 4 times as many boys and men are diagnosed with autism than women and girls, the reasons are not clear.  Are girls really less likely to be autistic?  Or are their behaviors (apparent shyness, discomfort with public speaking, difficulties with motor coordination, confusion over social communication in situations such as team sports) considered “feminine” rather than problematic?  Or do girls with high functioning autism actually behave differently from boys with autism, tending to be less aggressive, more imitative, and more likely to work hard to “fit in?”  While the reasons are not well understood, it seems clear that being a female on the spectrum may make you less likely to receive a diagnosis.*

YES. I’ve read many articles on this. Girls present differently than the traits in boys in which society is so aware of. I had no idea I was on the spectrum because I was only ever looking at the traits in males.

I’ve also read studies showing that as girls are naturally better at socializing, the females with Aspergers are able to learn the skills to fit in unnoticed. As socialization and relationships are very important to young girls, girls with Aspergers also show more of a desire to learn these skills than their male counterparts. The social issues that are noticeable in males, can be invisible in females because of their ability and need to hide it.

Unfortunately, I’ve also come across many stories where psychologists have refused to give a diagnosis because autism is a “male condition.”

5. Individuals from poorer and/or minority backgrounds are under-diagnosed with autism.  There seem to be two major reasons for this disparity.  The first and most obvious is that people with less money have less access to behavioral healthcare — and so are less likely to be able to access services, particularly for a child who is not obviously autistic.  The second reason seems to relate to cultural differences: in some communities, the “oddnesses” associated with high functioning autism are not considered to be particularly problematic. And, of course, for recent immigrants, it’s not surprising to hear that their child is not fitting in perfectly with American or “First World” cultural norms!*

Fortunately, I’ve been very blessed and this was never an issue. But it is a very real problem for the lives of many. When looking at children with possible autism, these factors are very important to keep in mind.

Well, this is how the article fits into my reality! I hope it helps broaden understanding and awareness.

*5 Reasons Why It May Take Years to Learn You Have High-Functioning Autism


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