Parenting an Autistic Child

2010.12.27.  Keywords: autism, Asperger's syndrome, diagnosis, patience, reactions, frustration

I've been a very hands-on parent of an autistic child for almost eight years now.  However, I was only aware Spencer was in the autism spectrum of disorders (ASD) just under three years ago.  He's been quirky since birth, and because of that it feels to me that I've known he's autistic for most of his life, when in fact I've only known for the recent third.  Jessica, my life partner, recently read an article to me about the importance of early diagnosis.  The article indicated that new tests can show whether or not a child is on the spectrum as early as twelve months of age, and emphasized the benefit of such a test is early treatment.

Early treatment?

That struck me as odd, at first, even incorrect.  Autism, as it is now understood, is a forever thing.  You don't get cured.  Your brain is wired differently, and nearly all treatments that can be applied are adaptation and management-related.  My initial thought was that Spencer didn't get early treatment, and yet he is thriving as far as Aspies go.  He not only has Asperger's Syndrome, but is the youngest kid in his 2nd grade class, scoring in the middle of the pack.

However, as I reflected further, I realized that Spencer did indeed get early treatment, just not from clinicians.  It was from me, and at the expense of my work.  As he became more mobile and aware, I went from working overtime, to working only part-time, and I hardly gave it a thought until years later.

Spencer is on the high-functioning end of the autism spectrum, meaning that he's closer to neurotypical than retarded or mentally "shut-in."  I sensed very early in his toddlerhood that he had difficulty engaging people with his eyes, or speaking his own words rather than reciting phrases he'd heard.  During his waking hours I would walk him around the neighborhood, prompting him dozens, even more than a hundred times a day to greet people as they approached.  Since he tended to notice peripheral, inanimate objects (shoes, belt buckles, hand bags, hats) I would encourage him to comment on them after having greeted the wearer.  Upon entering a building, he was fond of pointing out all the fire extinguishers, motion detectors, sprinklers and exit signs--I'd urge him to greet the clerks and shopkeepers first.  We would literally go on walking "adventures" around town, greeting people, and these would last up to five hours per day, three to five days a week.  The whole town knew Spencer, and Spencer knew the town.

By the time Spencer entered kindergarten, he had received thousands of hours of social prompting.  Nobody told me to do this with him, and I was hardly aware I was doing it..  I just sensed he wasn't going to do it on his own, and I kept seeing that he required prompting.  Today he is so engaging with others that his own psychologist declares that it's hard to give him an Asperger's Syndrome diagnosis, as being social is countertypical.  Of course when Spencer engages others, it's overwhelmingly on his own terms, on his chosen topics, and the conversations are usually very one-sided.  He still needs occasional prompting to look at people, let alone face them, allow them to speak, and to stay on appropriate topics.

Spencer's other obvious quirk was association issues.  When he was a toddler, I thought this was simply an eccentricity that would clear up over time.  He couldn't coordinate or express the relationship between objects, or the direction of action.  He would transpose him and her, all prepositions (in, on, under, over, before, after, through, with, of, for, from), even words like me and you.  He also strains to retain synonyms--multiple words which have the same meaning--he prefers for each different word to have its own meaning.  It's one thing when a kid is only two, but all of these language issues continued until he was diagnosed at five, and now (nearly eight) it has improved slightly, but continues.  This, along with some motor skill deficits, was the tip-off that he had some condition that needed diagnosis and treatment when he was five years old.  For almost three years he's had special education teachers, speech pathologists, occupational therapists, social workers and psychologists.  He's keeping up with his peers, academically, but still a dislogiac, an aphasiac, and essentially dyslexic, too.

Had Spencer been my second or third child, it would be easier--almost necessary--to keep up my workload and leave him in the care of his older siblings.  In such a case diagnosis would not only be delayed, but so would treatment, perhaps resulting in much more pronounced social isolation and language deficits.  And I must say that weekly sessions with an occupational therapist and speech pathologist are not enough for a kid with autism--they're helpful--but an ASD kid needs extraordinary guidance and accommodations in the home.  His life must have structure and role models that help with social integration and the assimilation of symbols.  In households where one or both parents are intuitive, early help in the home may come for the ASD child, but perhaps not adequately.  In other households early diagnosis is the best hope to minimize the impact of the disorder on mental and social development.

Early diagnosis benefits the parents

In my observation, it is the home that is the number-one factor in helping the ASD child.  All other therapies are secondary--not optional--secondary, as jogging shorts are secondary to a runner's shoes.  You can't omit the shorts.  Shirt, maybe, but neither shorts nor shoes.  And by home I mean the parents.  You see, early diagnosis for the kid means earlier--and better--adaptation for the parents.  This is the key.

An ASD child will provoke an adult, period.  It is the parent's reflex to sense defiance, hostility, overreaction, and other "spoiled" behavior, and punish the child.  An ASD child's actions and reactions can be severe and highly emotional, triggering outrage and anger from caretakers.  The child will seem to willfully ignore the adult, or deliberately disobey, or unnecessarily scream and cry, or incessantly ask, say, or beg something.  In a neurotypical child, these behaviors are discouraged.  An autistic child, however, does these things for entirely different reasons than other children, and absolutely will not associate a punishment with the behavior.  A shouting adult, a crying adult, a toy-siezing adult, a toy-smashing adult, a spanking adult, will simply terrify the child without teaching any lesson at all.

The ASD child, when confused or worried, may require three to six tellings of a command or question to comprehend it--but only if familiar words and phrases are used.  The child may not understand a lecture, especially in a state of frustration.  The child cannot relate to the feelings of peers and adults.  The child may have been speaking or acting out of reflex, or reacting to stimuli that is dismissable to us, yet overwhelming to them.  Spencer, like many Aspies, can have a severe emotional reaction to socks that don't feel right, food textures, bright lights, subtle smells.  ASD children can have hypersensitive perceptions, with synaesthetic (sense-combining) effects.  Seeing faces can cause the feeling of eye irritation, textures might give them auditory irritation, and certain memories or ideas might make them need to move around compulsively.

Though I sensed Spencer had unusual perceptions and reactions, until he was diagnosed, I didn't fully understand that these might be permanent.  In the name of good parenting, I wished to make him unlearn many of his impulses that were essentially immutable.

When he was about 2-1/2 years of age I gave him a time-out in the bathroom for being obstinate.  When he was getting warned, his reactions were getting more and more defiant and rude.  After bringing him out of the bathroom to see if he understood his punishment, I realized that he honestly didn't recall any of the described misbehavior.  As I further analyzed his behavior, I realized his rudeness was just a recitation of what he'd heard another adult say while angry.  He heard my frustration and automatically quoted the last frustrated adult he had observed, just trying his best to be appropriate in the situation.  His obstinance was just his innocent parroting, categorically matching phrases without understanding their meanings.  Next thing he knew he was all alone in the bathroom and daddy was angry.  The traumatized little guy cried and hugged daddy, saying "don't be mad."  Breaks my heart.  That day I vowed to stop emotionally reacting to his misdeeds.

Keeping your cool

Parents often punish insolence and defiance with a sense of righteous indignation, even anger.  Without realizing that an ASD child's perceptions and reactions are fundamentally different, a well-meaning parent can punish the child, time and again, without any instructive outcome.  A parent who not only doesn't understand his or her child's behavior, and suffers from impulse control and emotional instability, can harm an ASD child in the heat of the moment.  I realized, when Spencer was still a preschooler, that he really didn't understand much of what he was saying, that when agitated he was more likely to recite something, and that his misbehavior was better addressed with explanations and non-emotional indications of wrong behavior than with swift retribution.

Easier said than done for any parent.  Impossible for some.  Kids with ASD will not only ignore you, overreact to you, argue with you, insult you and cuss you out (if they've seen/heard it anywhere); but they will mistake contact or even words as a physical attack and respond with hitting, kicking, biting and throwing objects.  It's vital for ASD children to be raised by cool-headed custodians who are effective at helping them identify proper behavior without escalation or panic.  Spencer will exhibit threats, profanity and violence if he observes them, but if he doesn't encounter such behaviors for several weeks, such responses falls out of his repertoire.

A teenager with Asperger's Syndrome in northern Virginia was sentenced to 10 years in prison for breaking the ankle of a police officer who handcuffed him when he failed to respond to questions.  This is my nightmare as a parent of an Aspie.  In that case, one can hardly blame the police officer, the teenager, or the parent.  The awkward teen was obviously trained in martial arts, provided, no doubt, by well-meaning parents who most likely wished to instill in their child some self-confidence and the ability to defend himself.  Aspies, though, have a very hard time recognizing when they need to respond to someone, let alone discerning in every case when they're under attack.

If you are the parent of a child on the ASD spectrum, the biggest, most important lesson I can impart to you is this: you need to have unemotional reactions to your child's errors.  This doesn't mean don't react--it means keep your cool, completely.  Spencer's diagnosis at five only confirmed the decision I made when he wasn't yet three, and made it all the more easy to apply that vow throughout his early education.  I am famous for my patience and calm in a crisis, but like all human beings I can be provoked--not by a baby, but certainly by adults.  Many adults, however, have conditions and personalities that allow them to feel provoked by humans and animals of all sizes, or to not be able to empathize with others.  Such adults will be likely to harm an ASD child when provoked to rage, and given enough exposure to the child, it's almost a certainty.

Therefore I must concede that early detection of an autism spectrum disorder is important, not primarily for the benefit of early treatment for the child, but for a proper and timely adjustment of the adults, caregivers and peers in the child's environment, thus reducing the likelihood of abuse, neglect or abandonment.  If the parent adapts quickly, either by intuition or instruction, the child can have a bright future, perhaps earn a college degree and become relatively independent.  If not, the child will most likely follow the statistical probability growing up with a far higher risk of drug abuse, depression, isolation and even imprisonment.

As scary as all this may seem, parenting an autistic child is an absolute joy.  Spencer has a truly good heart, a creative mind, and is the most fun human being I've ever been around.  He makes me laugh and burst with pride every single day.  I have worked with lots of kids in my lifetime, and Spencer has been the most challenging, but also the most delightful.  The greatest challenges in parenting an autistic kid are self control and making the ample time needed to provide adequate guidance.  Keep your cool, not merely through the quirky, monotonous, or bizarre moments, but especially in the difficult.  When his intensity goes up, yours must go down.  That is the biggest, most helpful piece of advice I can give.  You will find in your practiced calm the ability to figure out what is really going on with your kid in a crisis, and therefore you can do the most good and the least harm.  With your attentive perception the other challenges--finding good therapists, feeding the ultrapicky eater, helping the child adjust to new routines--will all come easier.

I've had to sacrifice two things for Spencer's sake: (1) time, both work and personal, and (2) my entitlement to wrath when provoked.  If you also give up these things for your ASD child, you will receive interest on your investment.

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