I will be sharing and open with you, because by reading and talking with high-functioning ASD people, you will be able to see common thought processes and understand your own child's motivations and needs better. ASD is truly PERSONALITY issue (emotional state, response to social environment, etc.), not an illness, although there is a high likelihood that there can be co-morbid conditions that should be remediated (obsessive-compulsive, sensory integration dysfunction, anxiety/depression, adhd, learning disabilities, etc.). Autism can be considered a strength and an asset, if addressed correctly. Bill Gates, Thomas Edison, and many other highly successful people are high-functioning ASDs. The fictitional character Sherlock Holmes has been evaluated as clearly as having an ASD. Autism lends focus, an awareness of details, a need for structure and organization although difficulty with detail in this regard (the self-directed independent set-up of which in time becomes internalized if parents and schools provide it, so hang in there mom!) and an "outside the box" way of thinking. Childhood is incredibly difficult, but adulthood can be spectacular.
People who have known me long enough to have used up my rehearsed routines are never surprised at the informal observations I've gotten from my son's psychologists/psychiatrists, who when talking about my son's Asperger's , always mention that there are families in which it is hereditary while staring meaningfully at me with raised eyebrows....
When I was a school child in the 1970's and 1980's, I was labeled "gifted," in a school system that interpreted that label as meaning that nothing else could be going on. Remember that at that time, special education as we know it today was an emerging concept, not an established one. Fast learners were thought to also be rapid learners in emotional and social skills as well, no exceptions. If you weren't doing well, you weren't trying. At that time, a child with my Aspie symptoms with my IQ was considered willful, spoiled, self-centered, very overly shy, lazy...especially in regards to all the social clubs and functions in which I was supposed to enthusiastically participate to make my college resume look good (as well, I was informed to my confusion, to relieve stress and enjoy the "fun" and "relaxation" of massive social interaction in a highly emotional, loud, confusing environment) ... By the time I sought out counselors on my own as a young adult for anxiety, depression, and a dissociative disorder, I had self-taught to make eye contact, follow introduction routines and conversational turn-taking, appear attentive to other people's interests (no matter how irrelevant I thought they were), modulate my voice (5 years working in radio helped...no eyeballs staring at me and I could script everything), and had read enough psychology texts to understand that most people, for some strange reason, experienced social interaction differently than I did...and I reasoned that I should play along, against my natural inclinations, feelings, and desires, in order to survive. I had no idea why I was so different. As I worked toward my master's degree in Special Education, I was surprised when learning about Autism. I finally was reading something about me. The real me, inside. I wasn't alone! However, because of my other diagnoses already being in place, my counselor at the time didn't feel additional labeling was needed to address my needs in the counseling setting. The need for such labeling changes when we're adults; and if I know these things about myself, and I'm so high-functioning and have compensated for my worst "symptoms" already, why bother with it formally. Informally, he told me to use the information in my textbooks to help me adjust myself internally, to be more comfortable with the challenges Asperger's presents. I did, and things changed dramatically for the better.
So, with no formal diagnosis, how am I sure I'm Aspie?
--a desire to socially interact, but a tendency to not understand what's going on at anything but the most obvious level in social interactions around me, which results in a tendency for me to try to join in on conversations, but give "too much" or "too little" information to people for the context we're in, them thinking I've interrupted something or am too withdrawn and should be contributing more, my having an outward emotional response that others feel is inappropriate (frown instead of smile or vice versa, etc.), and so on.
--complete meltdown at unexpected changes, especially to established routines...I continue to work on dealing with the emotional response I have to this. After working for half a decade with education professionals in a school environment, even though I really haven't brought it up, they've pretty much figured me out. I get pre-warned for any changes if they can, with a chance to gather myself and reflect so I can stay calm rather than getting defensive and argumentative (I try to control, but it is hard). If my over-focus causes me to behave inappropriately, I am told in private that I was inappropriate, and given a directive as to the expected behavior next time (e.g. given a choice between reviewing data for my students or attending to a slow-paced review of the staff handbook during a meeting, I chose the data as my primary focus after already reading the handbook through during the first 10 minutes of the meeting...and that was inappropriate, evidently). As a child, I would hide and scream because the fear and pain was so great when I was surprised or abruptly corrected. Of course, now it's just a startled response, a frown, and defensiveness.
--My interests are VERY interesting. I hope you like them too. I've learned to "pay attention," and ask questions and stuff about other people's interests, but if they're not similar to mine, don't expect me to remain engaged long or remember anything about what you said! This is not self-centeredness like neurologically typical (NT) people think of it. Instead, it is a heightened tendency to "drift off." All NTs have moments when they "drift off" because "they like the other person but just didn't care much about what he/she was saying." In NTs, this causes, evidently, embarrassment when the drifter recognizes their "error." So, I rehearsed an "I'm sorry, I'm so embarrassed routine" to deal with it. Those aren't my real feelings. I wasn't interested, I drifted. You feel sad or angry because I didn't pay enough attention. My feeling isn't embarrassment. It's anxiety because I may have blown a social connection.
--A greater enjoyment of the natural environment than social interaction.
--A preference to be alone when I need to relax and unwind.
--Sensory Integration Dysfunction; in my case, touch and auditory defensiveness (things hurt those senses for me that don't hurt other people), poor vestibular sense, and taste/smell need for additional stimulation (yes, I struggle with my weight).
--"Over-focusing" on things of interest. This can be anything from students on my case roster (which makes me a great special ed teacher... remediating my students is all I think about at work... period), to a current book I'm reading, to how the little wheels feel and sound when you spin them on toy cars (I always carried a toy car as a kid because I loved the feel of those wheels). It's one of those cross-sensory things... I actually get a "feeling" in my eyes from the feel of the spinning wheels, and it is sooo goood.... kinda like chocolate.
--I was delayed in fine motor skills and overall coordination, in spite of being a highly technically proficient piano, violin, and cello player (All-State Orchestra 2 years in a row), with poor and immature handwriting until my mid-twenties. My teachers constantly accused me of "not trying" in regards to my handwriting. On the other hand, my music teachers constantly were frustrated by my "inability" to emote "correctly" in the pieces I was playing. Actually I WAS emoting correctly...for me.
I could give more examples, but I think the point is made. (See, I can stop myself and everything... yay!)
The dissociative disorder I mentioned above comes from how I was parented and the responses of my teachers to my behaviors. In order to live in a world where evidently everything I did when I followed my own feelings and natural responses was wrong and PUNISHED (by my mother and my teachers), I had to separate my feelings from my thoughts. In high school, my nickname was "The Vulcan" because I had a "negative affect" (no outward show of my emotions). Keeping everything bottled, especially at the autistic level of feeling, resulted in severe anxiety, agoraphobia, and mental exhaustion. However, since I'd separated myself from any feeling, my body took the brunt of the stress. In my late twenties, I had to go on anti-anxiety medication because I was constantly shaking as if I had Parkinsons. I had to see a neurologist first because I had no idea that it was emotions that I was feeling. I just couldn't stop shaking.
I have been screamed at, spanked, had my things taken away from me, denied participation in things I was truly interested in, and even slapped by a teacher once, all for behaviors that are clearly ASD. Did these things change me for the better? NO. They made me worse...and gave me other issues that hindered my reaching my full potential. Those behaviors weren't willful, they were a true expression of my emotional experience, needs, and desires. Punishment told me that I, as a person, was wrong for being me, and nobody cared for my feelings or needs.
When I have a high-functioning autistic come through my resource program, we get along great. He or she enjoys coming to my room. Over time, we discuss the routines we need in order to get what we want and need (before you judge those words...when you socially interact, you are fulfilling a want or a need for yourself, as you do when you work, eat, etc...so why should that be different for someone with an ASD?) in a world filled with people who see the world differently from us.
Note that modern ASD "interventions" involve highly structured environments and routines, and an emphasis on positive reinforcement for behaviors comfortable to neurologically typical people. It works, for all concerned.
The definition of "personality," according to the dictionary, is the state of being a person, "the totality of an individual's behavioral and emotional characteristics." A personality disorder involves someone who has become disconnected from themselves, their emotions, and their self-identity. Initial behavioral responses, before a society or culture's filters have imposed directives and restraints (all that parenting done in infancy and toddlerhood), are an expression of the indivdiual's personality...their inner thoughts and feelings. Autistics think and feel differently... we have a differing personality type than the "norm." It can often be in direct conflict with that norm, and coping skills need to be learned to interact with the social environment successfully. However, suggesting that an autistic should be "cured" is like suggesting that YOU should be cured of your own unique personality traits. Hurts to consider the idea that "you need to be cured of being you"...doesn't it!
Autism should not be "cured." It has traits that have contributed greatly to our current world, mostly for the better. However, because autistics are a minority, expecting them to adjust within reason to the majority around them when basic survival needs are tied in to conformist behaviors, is a realistic expectation. If I move permanently to another country, I have to learn new social behaviors to deal with different cultural expectations, no matter how uncomfortable they make me feel. However, nobody would expect me to be someone other than myself, regardless of where I live. The same goes for living anywhere in the world with an ASD.
I hope this helps you make good decisions for parenting your son.