Lara Schaeffer

Visible Proof of Twenty-Year-Olds with Undiagnosed Autism Spectrum Disorder in New Jersey

A look at any chart noting autism rates in recent decades tells the same story, and a bit of extrapolation paints a very concerning picture regarding adults and autism.

I have added the blue horizontal line to this chart of CDC data from 2018 which indicates steadily rising rates of autism among eight-year old children in eleven states. Recent research agrees that genetic factors are most at play in causing autism; in fact, a wide-ranging study in 2019 across five countries found that autism causes are 80% genetic. A great deal of research in recent decades has found no environmental factor influencing autism rates, and certainly no factor that is increasing with such predictable regularity. What that all means is that rates have been increasing because we have become better at recognizing and diagnosing autism.

That rise in rates THEN means that the white space under the blue line and above each bar indicates autism cases that were missed. Since the rate of autism increased from .67% to 1.69% from 2000 to 2014 as indicated by the chart, that full percentage increase likely indicates that a great number of eight-year olds had autism at the time of the study but were not identified. These individuals are now in their teens and twenties, and many of them are likely still unaware of their autism.

To add, the current CDC rate of autism of 1 in 44 children equals 2.23% of the eight-year old population. TWO to THREE times as many adults likely have autism than are aware. What this means for people born before 2000, people now in their mid- to late thirties, forties, fifties and older--what is presumably true--is that hundreds of thousands of individuals likely have ASD and don’t know it. I was one of these people, and you might be one, as well.

Diagnosticians classify autism as level 1, 2, or 3. All levels of autism require support, and levels 2 and 3 require significant, or very significant, support. Those with undiagnosed autism very likely have level 1 autism, an assumption bolstered by the fact that, up to the 1990’s, only people with severe symptoms were given autism diagnoses. In other words, for those in school in the 70’s, 80’s, and 90’s, autism never would have been considered to be at play unless symptoms were severe (which could include a person’s distress caused by difficulty adapting to change or his or her discomfort experienced in certain situations being so great that behavior turns self-injurious).

Now we know that autism can occur in people with: normal, average, and above average intelligence; good language skills, although their autism would cause some types of communication challenges; and people who more or less blend in with the neurotypical majority, although social interactions would pose certain challenges. All of those elements, IQ, verbal ability, communication skills, and basic social function, contribute to the labelling of roughly between 45 and 55% of autism cases as “high-functioning” (as opposed to “low-functioning” or “severe” autism when an intellectual disability is also present, as indicated by IQ under 75).

What’s crucial to understand, however, is that the designation “high-functioning” does not make clear that this form of autism still brings SIGNIFICANT challenges of great range, types, and intensities. These symptoms impact the daily function of those on the spectrum in substantial ways.

Those with high-functioning autism face great obstacles in living a life where they interact regularly with neurotypical people. That vast majority of society follows innate social constructs and instincts which simply are not automatic for autistic people. Many with high-functioning autism have adapted and do something called “masking”—subconscious mirroring of patterns of speech and social interactions so that they can get by in this world where the unspoken rules of interaction do not come naturally or easily to them. Separately, those with autism are often burdened by exceptional sensory sensitivities. Due to masking, severe reactions that many autistics have to noise, smells or other sensory variables often end up suppressed.

So “masking” involves mimicking and participating in social constructs that are uncomfortable as well as the suppression of intense reactions to stimuli. Because all of this is done dozens and dozens of times in a day, day in and day out, life on the spectrum can be exhausting and lead to severe stress, anxiety or depression. Over the years up until my diagnosis, I unknowingly became “high-masking”; some might not realize right away that I have autism. Since my diagnosis, however, I have reduced the time I am in situations that are uncomfortable for me, and that has made a big difference in my life.

Most people on the spectrum tend to be very introspective. As autism and its symptoms have become more widely discussed in recent years, you may have been asking yourself, “Do I have autism?” If you now believe that you do have ASD, or if you have been recently diagnosed, you can reconsider how best to negotiate the neurotypical world. That includes determining what level of interaction with others is most comfortable for you as well as whether or not, or when, to tell others about your autism. I know personally that finding out you have autism as an adult changes your whole perspective on life. Keep up with my blog for posts you might find helpful, and hang in there…I’m here if you ever want to talk.

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