I would like to take this opportunity to express my thankfulness to my mother, who did not seek intervention for my autistic traits. At the time I was a toddler, which was in the early to mid 1970s, autism was not thought of as a spectrum disorder. It was synonymous, for the most part, with what we now call “low-functioning” autism. Certainly I did not present as low-functioning, so I never would have been flagged as having been autistic. The condition we now call high-functioning autism did not gain any real notoriety in the English-speaking world until after the publication of Lorna Wing’s 1987 review of Hans Asperger’s work. The debate as to whether Kanner’s autism and Asperger’s autistic psychopathy, which Wing dubbed “Asperger’s Syndrome,” were completely separate or related conditions led directly to the concept of the “autistic spectrum,” which is now considered to be factual by most. As far as de facto autistics go, I am very much on the “mild” end of the spectrum. Still, as a child, my behaviors were pretty obviously autistic.
I do not blame my mother a bit for not making the connection between my unusual childhood behaviors and autism. Even most doctors at that time knew little, if anything, about autism, so I would not expect a young, first-time mother to know what her physicians probably did not. She knew from the beginning that I was unusual, but as long as I seemed to be thriving, she was not too worried. As I learned more about my first three years, as a result of pestilent questioning, I realized that my first signs of autism went right to my date of birth. I could not suck from a nipple (of any kind) and coordinate the swallowing movement. I lost nearly a pound of my premature six pound weight before this was remediated. At one month of age, which would have been my due date, I learned to suck and swallow. Still, though, things were not normal.
I learned to turn over early, but it was not a graceful movement so much as a flopping over by flapping my spindly limbs. Soon I lost that ability and did not regain it until much later. Babbling was limited, and other than fits of screaming for unknown reasons, I was a quiet baby. I did respond to tickling and such things with a smile, though, and no one ever thought I was deaf. If anything, my hearing was hypersensitive, and I noticed every little noise, even if others initially didn’t. Before my first birthday, I began to resist being picked up, and I did not like to be held. I never crawled; I rolled, right up until I began to walk in the fourteenth month. I still hadn’t uttered any words. I continued to
make noises and verbal stims, but no words, until about the twenty-fourth month, at which time I began to speak… in sentences. Many of them were echolalic, including instant and delayed parroting of TV commercials. As my ability to express myself grew, I began to do the pronoun reversals, and to call myself by my first name instead of “I.” At about that time, I was first introduced to children my age. I ignored them totally, as if they were not there. I could be “in a room full of kids and still be totally alone,” my mother tells me. I would also spin any object I could get my hands on, sometimes causing frustration in adults.
Through all of this, there were no worried visits to the doctor, or fears that I was some genetic freak. When I was about thirty months old, my mother enrolled me in Montessori preschool to try to get me to be a little more social. The curriculum did not stress group achievement much, but at least I would be exposed to other kids, my mother thought. I did pretty well there, aside from screaming fits when I was first dropped off.
Years later, I began at the local public elementary school, and I began to experience shutdowns in class. The special-ed teacher somehow knew what to do, and would come and get me and give me short breaks from class. That problem was solved, as far as everyone was concerned. It was in about the first grade that I made my first real social overtures toward other kids without prompting.
At home, I did the toe-walking all the time, and I did all sorts of stim behaviors like hand flapping. I still preferred to be alone. I would get obsessed with certain subjects, and I would want to talk about nothing else. I never did that with my peers; I still had little interest in them. Adults, though, would often listen to my precocious lectures, probably very amused by them. I struck everyone as an amazingly bright little boy, and I suppose that I was. That goes a long way in having people excuse your bizarre behavior, at least in the early years. My status as a “gifted” child seemed to be a handy explanation for all of my strange behaviors, including my notable hyperactivity. Certainly, no one thought that there was anything “wrong;” if anything, something was very right about me. Had I not been hyperlexic, I am sure that my autistic behaviors would have been much more objectionable. Fortunately for all involved, I was not self-destructive, and my angry impulses, while obviously present, were well-controlled. I suspect that my mother’s acceptance of my unusual behaviors may have been a significant cause of my nonviolent character. If she had tried to change me, I may not have exhibited such control.
My mother never pushed me to be social when I did not wish to be, and I am glad she didn’t. Some autistic children (aspies especially) want to have friends, but do not know how to make them. These children should be helped to make friends, but never should the issue be forced. Some children, like me, did not really care about their peers at all, and these children should not be forced to socialize against their will. In time, most will begin to desire social contact in their own way, and forced social interaction will not make that happen any sooner. In fact, it may feel so unpleasant to the child that he associates unpleasant feelings with social contact, and he will be more asocial in the future. Parents often think it is “so sad” to see the little boy or girl playing alone in the corner of the yard, but it is not sad at all if the child is happy that way. I have always preferred solitude, and I am most happy when I am alone. Even now, as an adult, people think it is “so sad” that I spend so much time in my apartment alone. I do it by choice; it is not sad… it is just different.
Similarly, I was never forced to make eye contact or to stop stimming (which my mother called ‘fidgeting’). My mother gently suggested that I might want to stop hand-flapping, so that my peers would not give me a hard time, but never made an issue of it. She never tried to get me to stop rocking; in fact, at one point she bought a rocking chair. These stims are harmless behaviors that help an autistic child release stress and get back in tune with the world. The autistic child’s experience is a bewildering one, full of motions, lights, noises, and odors, and the sensory input sometimes gets to be way too much for the child. At these times, an autistic person may stim, pace, or seek a quiet place with no one around. This is a necessary thing for any autistic person, children included, and by no means should a child be deprived of his outlets to release stress. Normal people have no idea how stressful it is to be autistic. Things that you do not notice may cause more stress for your child than
an unfinished 1040 on April 14th does for you. Never underestimate the stress your child experiences in noisy, bright, crowded, or social environments. It can be brutal, and the tantrums that may result are beyond your child’s control. This is what autistics often call a meltdown, which happens when you have ignored the signs of stress too long. They are there if you look for them: increased covering of the ears or eyes, increased stimming, increased restlessness or hyperactivity, complaints of upset stomach, increase in that glazed-eye, “million mile away” look… the signs of impending overload or meltdown are numerous, and each child will have his own set. Be aware of them, and do not underestimate them.
In retrospect, my early childhood was quite unusual, but I was accepted for the odd child I was. In my case, that was the best thing for me; I am firmly convinced of that. I began to realize I was different in
about the third grade, but it never bothered me. I was never given the impression that unusual was bad, or that I had a problem. No matter how well-intentioned a parent may be, taking a child to a doctor to see why he is so “weird” tends to implant the idea that there is something wrong, something “bad” about the child. I never knew why I was taken to the special ed classroom to play on the balance beam, but I knew that I was being singled out, and even though it apparently did me some good, I did not like it, and I wondered what was wrong with me. Imagine how much worse it would have been if I had been taken by my mother, whom I trusted more than anyone, rather than a teacher.
Imagine if I had to stand there listening to her tell a doctor about how weird and unacceptable I was (which is the message the child gets). Imagine how much more “weird” I would have felt if I was taken to special classes, or gone to a special school. I am not saying that such things should never be done; on the contrary, in some cases, such things are vital. All I request is that you be aware of the effect these things have on self-esteem. Please, don’t discuss your child’s behavior with the doctor while the child is listening!
As it turned out, at least in terms of academics, special education was not necessary for me, as it is not for a lot of aspies, and a few high-functioning autistics like me. Sometimes parents overreact and put their kids in all sorts of programs just because those programs are there, though. They listen to the doctors make wild guesses about prognosis (and that is all they are– wild guesses), and they panic
about their children’s future. Don’t panic! This has to be approached rationally and logically. If the child cannot function in normal classes, then alternate plans must be made, but don’t make use of resources that are not needed just because you can. Doing so can easily prove to be far more destructive than helpful. An autistic child’s self-esteem is going to take a beating in the years to come, no question about that, so it is imperative that things that will hurt that self-image be avoided if at all possible. Only a very strong self-image will be adequate protection from the self-esteem clobbering that is to come. You must daily work to build that self-esteem.
Depression is an ever-present menace in the autistic community, and this must never be forgotten for an instant. Even if the child does require special education, be sure that he never gets the idea that he is broken or defective. This means going to what you may consider to be ridiculous extremes to prevent this idea from forming in the child’s mind. Never allow the child to think that “different” is not a good thing. This may even mean prohibiting exposure to certain relatives that do not understand
that autism (including AS) is neurological, and not a sign of bad parenting. Some relatives may take it upon themselves to “correct” your child’s behavior… things like pulling the child’s face to theirs and saying, “Look at people when they talk to you, or else they will not like you,” or things like that. If that does happen unexpectedly, rebuke the relative immediately, in front of the child. Explain to that relative, in private, that parenting is your job alone, and if that is not something that relative can accept, they will not be allowed exposure anymore. This may be very tough to do if the relative is one that you have typically been intimidated by, but it is imperative that you do so.
Anything that makes the child feel bad or embarrassed by his behaviors will cut away at his self-esteem. Please be aware that even when you do all you can to prevent this, the child will begin to notice his differences on his own, and if you allow anyone to plant the smallest seed of doubt regarding the validity of those behaviors, the child will begin to think of himself as lesser than his peers. The child’s peers, especially in a regular school, will pick on a child who is different, and this
is tremendously damaging, especially for children that want to have friends. This cannot be prevented fully, and that is why you must do all you can to prevent that which can be prevented. Be sure the school is aware of the problem of bullying, and be clear that the only acceptable amount of abuse is NONE. You may have to get rather belligerent with the school to get them to stop the bullying. Through elementary school, it is reasonable to expect that bullying will be stopped. It’s much harder to prevent in the multi-class middle school environment.
Middle school is the worst. My mother tried to help me here, but she lacked the experience I now have. In my school district, fighting back was just as unacceptable as attacking someone, and I was taught to respect the rules. I did, but the other kids did not. As much as you may not want to hear it, your child should be allowed to disregard the rule against fighting back if he is physically attacked. If your child is attacked, it is a sign that the school is not doing its job in preventing bullying, so the child that fights back is not the one at fault– the school is at fault. If the school suspends your child for legitimately defending himself, use the day off to take him to get some ice cream. Your child’s self-worth is more valuable than some arbitrary rule. The bullying in seventh grade is brutal, and it is unrelenting. I am not really sure if it is possible to stop all of the abuse in the middle school years, and if you are at all up to the task, I strongly recommend home schooling from the first year of middle school through the end of the first year of high school. Those are the most abusive years, by far, and the level of brutality and intentional terrorism of which middle school-age children are capable is astounding. In my case, this abuse destroyed my self-image, and I suffered depression that lingered eight years after I graduated from high school.
My mother did the best she could in middle school, but it was not enough, which we both know now by experience. She told me that if I was attacked or threatened, I should go tell an authority figure. That only made it worse, and after more complaints to my mother resulting in the same advice, I quit telling her. I suppose she thought that the problem cleared up, but it didn’t. I suffered in silence for years, with only the occasional obvious bruise or food stain on my clothes giving testament to the abuse of the day. Be sure to tell your child to tell you ALL of the bad things that were done to him, and be sure he understands that it is OK, and that it is NOT his fault. He may be embarrassed, and may not want to tell you. Keep in mind that autistic kids are generally stoic, and the actual abuse is probably a lot worse than you think from hearing the child’s reports.
All in all, my mother did a great job of raising a strange kid. Before I knew I was autistic, I used to think she did a rather mediocre job, but as I have learned about the things parents do to their autistic children, I have become very appreciative that my mother accepted my weirdness and did not try to make me into a normal child. Too many parents and professionals try to do this to autistic kids. Take my word for it: your autistic child is not normal, nor will he ever be. There is no recovery from autism– the stories you hear about that are not as they appear. Temple Grandin claimed to be a recovered autistic when she wrote her autobiographical book Emergence: Labeled Autistic, but in her next book, Thinking in Pictures, published nine years later, she simply refers to herself as autistic. She has improved in her ability to function, but she realized that she was still autistic, and that she always would be. Recovery from autism is a wishful-thinking fantasy borne of denial. That does not mean that there is no hope for a bright future! If your child is allowed to grow up appreciating himself, his differences, and is given the tools to live in this strange world, WITHOUT trying to cure or remove the autism (which won’t cure the autism, but will instead promote self-hatred), he can grow up and do things the doctor said would be impossible. You may be really surprised at how much is possible if the child never gets the idea that he “can’t.” Can’t is a horrible word, perhaps one of the most disabling words in the English language. Don’t concentrate on what your child cannot do; concentrate on what he can do, and build on that every chance you get. As you do, “can’t” will get smaller and smaller with the passing of each day