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Autism awareness has increased. So has internet connectivity. In this context, you may be discovering why you've always been a bit, or a lot, different. Could you be an adult with autism, and should you pursue a diagnosis?

With increased awareness of autism as well as much more widespread access to the internet, it is not unusual for folks who have always known that there's something significantly different about them to finally catch onto a possible cause, and to start suspecting they could be adults with Asperger's or otherwise fall on to autism spectrum. If you're among them, you're in for quite a ride, whether that ride includes self-exploration or formal diagnosis. 

We're here to offer some starting points that will hopefully help you along the way. 

What Is Autism, Really?

This question could be answered on so many different levels. 

To some, autism spectrum disorders represent a "lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them" [1]. To others, it's "a devastating neurodevelopmental disorder" [2]. Yet others describe it as a neurological and developmental condition that is typically deemed a disorder, as a disability but not a disease, and note that "autistic people usually share a variety of characteristics, including significant differences in information processing, sensory processing, communication abilities or styles, social skills, and learning styles" [3].

Then, there are those who describe autism (and often Asperger's in particular) simply as another neurobiological variety that has both pros and cons [4].  

Research has found that people on the autistic spectrum have differences in many areas of the brain, from the brain stem to the frontal and parietal lobes and the amygdala [5, 6]. It is clear that people with autism exist across the IQ-score spectrum [7]. 

Simon Baron-Cohen describes a "mind-blindness theory of autism". That is, he suggests that autistic people have a reduced inability to reflect on one's own thoughts and those of others. The idea that autistic people are devoid of empathy floats around rather a bit as well [8].

There's also another — more palatable and less dehumanizing — theory, though. The "intense world theory of autism" proposes that autism's "core pathology is", rather, "hyper-reactivity and hyper-plasticity of local neuronal circuits". In this view, autism spectrum disorders are the result of "hyper-functionality, which turns debilitating, as opposed to disorders of hypo-functionality, as is often assumed". According to the intense world theory, autistic people aren't mind-blind of lacking in empathy; their brains, rather, become so overloaded with stimuli that they need to withdraw from this intensity, leading (neurotypical) others to draw the wrong conclusions. [2] The same underlying brain differences that lead to these characteristics can also cause hyper-memory, hyper-learning, hyper-emotionality, and hyper-perception [9]. 

Fascinating, no? We could go on all day and beyond, as many already have, and though I hope that this brief interlude might help you see your possible autism more broadly than the diagnostic criteria, which appear to frame everything autism-related in terms of "deficits" rather than differences, it still doesn't tell you whether you could be on the spectrum. Let's look at that now. 

Autism Spectrum Disorders; Diagnostic Criteria

Diagnostic criteria can be hard to understand for laypeople for many reasons. Those include the fact that they are looked at clinically by people who do not, themselves, tend to meet those diagnostic criteria. Those people are bound to see autism differently than autists themselves!

Are you displaying the signs of autism? I'll just dump the full list of diagnostic criteria, as defined by the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, the DSM-5 [that's here, for your reference: [10], here. Since that may not help you an awful lot, however, I'm also going to include comments from adults diagnosed as being on the autism spectrum, to help you understand what those diagnostic criteria might look like in practice in real people with autism. 

Our commenting guests are Kosta, an autistic father of four who was diagnosed as being on the spectrum a few years ago after one of his children was, and Haley, a full-time mature student who was diagnosed with Asperger's Syndrome in her teens. 

  1. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history:
    • Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
    • Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
    • Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Kosta: "Although I love to interact with people, I do not always find this easy. I find it very hard to read people, as people often don't say what they really mean, but expect you to guess based on other clues, such as body language and facial expression, which I do not understand very well. As for other people's reactions toward me, people tend to see me as very blunt, but I like to make myself clear and not leave space for ambiguity. I am told I take things too literally. I overheard my wife telling a friend that you have to tell me exactly what you want, or I won't understand. That is true."

Haley: "People tell me I have a tendency to monologue when I'm just being myself and to talk about my special interest incessantly. I don't think my 'autism hangs out' that much anymore, though, because I've been observing neurotypical people and the way they communicate for years and have become very successful at mimicking their ways of communicating. I 'fake' eye contact by looking at people's noses or their eyebrows, but still really can't look at people's eyes because it feels like lasers to me. My voice, apparently, is flat and abnormally loud, and there's not much I can do about that, but that still doesn't make me stand out as obviously autistic. I think this is not unusual when it comes to Asperger's in adults"

  1. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
    • Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
    • Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
    • Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
    • Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Kosta: "This covers a lot of things! I cycle through special interests, which I hyper-focus on until I get bored with them. Examples including making wooden toy cars for my children, bread-baking, making furniture, and sewing. Whatever it is, I have to have the highest-quality tools to do it with! When I master a skill, I get bored and move onto the next thing. As for sensory overload, I don't have meltdowns or anything. I simply withdraw. Some noises drive me crazy, and I do not like to be around too many people at once. I engage in less obvious stimming, such as wiggling my feet on a bottle, chewing gum, or rapidly moving my legs up and down. It drives me mad when someone makes small, repetitive noises, such as children are prone to do, and I can only listen to certain songs. Before my ASD diagnosis, I thought I had ADHD."

Haley: "Oh, yeah! I eat the same five meals over and over again and this is very common among aspies. I struggle with sudden changes, though I make do. I like my routines, such as walking the same way to the store every time. Loud people make me uneasy, whether they're neighbors, or people in the library, or honking cars, and I 'feel' people's vibes very overwhelmingly. Not everyone experiences these things in the same way, obviously. You don't have to be like to to be autistic!"

  1. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
  2. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
  3. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

Kosta: "Yes, the same things were present in childhood but people did not know about Asperger's then. People used to tell me I was 'in my own world' and did not notice the world around me. I was clumsy and did not interact well with other children. I feel I function well now, because I have learned to 'act' to blend in with society. However, I do need significant time spent in solitude doing my projects to feel normal, or I get overloaded and cannot put on that performance."

Haley: "People knew there was something 'wrong' with me before my diagnosis, yup. You do have to have displayed symptoms of autism in early childhood to get a diagnosis as far as I'm aware, and if you don't know this yourself, I advise you to ask your parents or another relative to tell you about yourself as a child, and even to ask for photos and videos if you don't have any."

Can You Still Have Asperger's, Even Though It's Not A Diagnosis Anymore?

By definition, those autistic adults who have been able to "fly under the radar" until now almost certainly fall on the portion of the spectrum officially known as Asperger Syndrome, which features normal or above average IQ ranges and no language delays in childhood. [7] It is also possible that you would have been diagnosed if you were just a bit older — the DSM-IV, which made Asperger Syndrome an official diagnosis, came out in 1994 [11]. Those people who reached adulthood before that time may well have actually been on the radar of teachers, parents, and others in their environments, but without a suitable "label", they were simply deemed "weird" or "different". 

Though Asperger's has now been replaced with the term "level 1" autism, indicating that you do not need significant accommodations to function in society [12], the features that Hans Asperger, the physician after which Asperger's is named, certainly still exist. He described "a lack of empathy, little ability to form friendships, one-sided conversation, intense absorption in a special interest, and clumsy movements", and called those affected "little professors" as they were able to talk about their areas of special interest with great knowledge. [13]

I Think I'm Autistic: What Now?

If you think you recognize yourself as being on the autism spectrum, you may first like to read up about it on the internet. You may wish to explore online "autism tests", which do not in any way equal a formal diagnosis but should give you some indication as to whether you're possibly on the spectrum. These include the Autism-Spectrum Quotient [14] and the Rdos aspie quiz. You may additionally like to read blogs written by people diagnosed with autism. You may find recognition there.  

Some people are quite content to remain self-diagnosed (something that, you should be aware, comes with the risk that you are wrong) or self-suspected autists or aspies. Should you want a more definite explanation for your challenges and differences, should you feel you need access to available services, or should you need accommodations at work, however, you may want to pursue a formal evaluation. [15]

You can simply approach your family doctor to set the process in motion, though you'll want to be aware that some healthcare professionals, including psychologists, have outdated ideas regarding the autism spectrum, and especially about signs of Asperger's in adults, who have learned to adapt along the way. Any formal evaluation should be conducted by someone who is deeply familiar with adults on the spectrum. Depending on where you live and what kind of insurance you have, this may be covered by your insurance or you may need to pay for it out of pocket. The cost of an evaluation is one reason why many people have no choice but to remain undiagnosed.

Regardless of whether you end up with a diagnosis or not, a realization that you're most likely on the autism spectrum can help you in several ways. Besides finally having an explanation for the many ways in which you're different, you'll be able to connect with other autistic people online and offline and learn from the coping mechanisms people with autism have developed. 

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