Family Life with an Asperger’s Child – Routines to Survive?

Just as an ASD child looks, at first glance, like a neurotypical child, family life with a child affected by Asperger’s appears from the outside quite normal (at least most of the time). But in reality, everyday life with anybody on the spectrum is a dance on thin ice.

Parents and siblings over time become experts in prevention of aggressive outbreaks, melt-downs and/or anxiety attacks. Everybody ends up – consciously or unconsciously – bending their behavior, reactions, verbal and body language around the ASD person to shield them and themselves as much as possible from the explosive possibility of transition screams, excursion refusals, homework disasters, dinner melt-downs, TV nightmares and bed-time battles. Parents go through elaborate procedures to ensure that everything is in its place and routines stay the same.

It all starts very innocuous, by doing what many other parents do: We cut out tags that irritate, we quickly replace the favorite toy that broke, we cut up sandwiches in the correct shape, we serve their favorite chicken nuggets, we buy the toothbrush in the favorite color or we let them watch their favorite TV show at a certain time.

However, slowly but surely with an ASD child – it is hard to notice when you cross the line – certain preferences are not outgrown, but solidify into a must-be-this-way-or-I-explode. So we are faced with buying only that cereal in the red box or nothing will be eaten for breakfast, searching a certain brand of socks because all others don’t feel right, having to be home on time for that TV show, playing every song from the favorite CD in the car three times, switching all light on and off twice before leaving the house … and all of a sudden, confined in almost impossible restraints on your life, you think – how did I get here?

So then you are faced with a decision: try to hang on to your sanity and break the cycle by insisting on a change, but face ongoing melt-downs and refusals to leave/eat/sleep/dress – or keep everything the way it was, with a fairly smooth sailing routine, but paint yourself into a corner of ever increasing obsessive-compulsive behaviors. It is not as easy an decision as it might seem. If you yourself are overtired and stressed, have to go to work on time or have other children to take care of, it often seems that conforming is much easier. It is certainly more predictable since you are the one that does all the work. If your child gets worked up, there is no telling how long the melt-down will last and what other ripple effects this will cause in your family. However as you realize that the routines get more bizarre since you can’t help the downward spiral or if you get the unfiltered observation of an outsider to refocus for an instant, the shock of how much your home life is ruled by the demands of a child and how incapacitating these routines are for you AND your child, you come to a point where something needs to change. But change isn’t easy. Asperger’s kids are strong willed, insisting on their routines, which after all bring them comfort and take away anxiety, and have thus much more at stake that just “wearing new socks” or “watching a different show”. The common advice of “Just serve nothing else but veggies to them for a couple of days and they will eat them” does not work – if you can’t stand the sensory input of mashed potatoes, the battle is not about food, but changing developed coping mechanisms (“don’t eat this”) for negative input. Overcoming this can take more than a couple of days. Why wouldn’t you fight change with all your might, if only switching the light on and off enables you to control your anxiety?

But, in the end, you must help you child to break though this barrier – slowly, gently, compassionately. If you can’t change routines, you need to at least divert them, expand them, soften them. There is a very fine line – and it is different for every parent and their child – at which you need to intervene if you want to enable your child to live without the constraints of OCD. You might be only able to change one of the routines at a time, it might take weeks and in the end your child might replace the routine with something similar, but you will eventually teach your child to be able to bear a bit of flexibility without an anxiety attack or aggression. If you keep the same routine going without ever challenging it, you won’t give your child the chance to realize they have outgrown it. So in order for them to function in this world – and is that not the ultimate goal for our children? – we need teach them that changes in routine, while not pleasant, are survivable.

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Introduction to Asperger's Sydrome, help and support by a teacher and mother of 2


What does an Aspie look like?

It is hard to tell Asperger’s kids from their peers by just looking at them – they don’t necessary look any different then their NT (neurotypical) friends. They might move a bit awkwardly or fiddle with something, they might not participate in school yard games or sit alone on the bus, but when you come into a controlled classroom setting, they don’t usually draw attention to them, unless they are hyperactive, too.

This is why Asperger’s often does not get diagnosed until the age of 8 or 9 (average age is 11), when the small coping mechanisms developed in early school years do not work anymore. Aspie kids often excel at math and have sometimes taught themselves to read or at least are good a memorizing letters, so that in the primary school years, academics is seldom a problem. Social studies, music or sports are a better indicators of problems – lacking creativity, noise sensitivity and gross motor problems come to light here – but these are often ignored or dismissed (but parents as well as teachers), since the child seems academically on target. When school work gets beyond the pure mechanics of reading or calculating – comprehension of chapter books, creative story telling, text problems in math – the deficits of “theory of mind” are more obvious and performance often take a dramatic drop, resulting in aggressive/frustrated behavior or anxiety to go to school.

But back to how Asperger’s is often invisible at first glance. In contrast to a physically impaired or non-verbal autistic child, our children are usually not recognized in the first 15 min of observation. To the untrained eye, it might even take longer, especially in a society that accepts quirky behavior and has a greater tolerance for deviation from the norm (like the UK versus the US). After a while, however, certain patterns become apparent. Often a child with Asperger’s will have a routine it follows on a playground (always up the same ladder and down the same slide), they might be overly chatty with other children, asking the same question over and over again or persistently telling them about their favorite topic even though the other child has lost interest a while ago. Certain hand motions or repetitive movements, muttering to themselves or sensory issues (not going into the sand or insisting on keeping on a coat) are a little more obvious.

Unfortunately these seemingly normal children often have a propensity to explode into screaming or crying fits or even aggressive behavior – be that for not getting a turn soon enough, getting no or the wrong snack or simply having to leave. While these behaviors are generally accepted for children under 5 and parents give each other a smiling “Been there” nod or chuckle, reactions change dramatically, if your child is older. Once they crossed into school age, your child’s behavior starts turn heads, causes disbelieving whispers and disapproving stares. “Bad mom” – “Can’t control her kid” – “Spoilt brat” – “A good spanking would solve this” – “I would never allow my kid to behave like this in public”. The humiliation you feel and the contempt you see in their eyes, is hard to describe and you leave as soon as possible. But when another person feels righteous and entitled enough to actually tell you, what they think of you, your child and your parenting style – those are moments you never forget. They eat you from the inside, they make you stay up at night and even the snappiest come-back (“Well, he is actually autistic and if you know the secret how to make autistics behave, why don’t you write a book about it!”) will never erase the pain and humiliation you felt at the line in the supermarket. Most likely you will cry in the car on the way home, tell your husband and maybe your best friend, come up with an even snappier comeback for the next time and then go back to life the best you can after a horrible night.

I have avoided certain play grounds at certain times of the day, because of the mothers I would meet there, I have left many birthday parties early and hosted most playdates at my house in order to avoid the stares. But sometimes, there is no way around them: You still have to face the bus stop moms the next day after you child threw a fit a pick-up, you still have to see the same moms again at music group or mini gym (at least until the course is over) – and in those cases, there has often come a time (probably after the second or third ‘incident’) where I told people about the diagnosis and life gets a bit better. After “the talk” it is only the kids that still make comments or stare, while their parents are embarrassed and tell them to be quiet.

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Raising a child with Asperger’s Syndrom

Welcome to the schizophrenic world of an Asperger’s Syndrom mother, where every day is spent on the roller-coaster of “he will never function in society” to “everything will work out fine” and back down.

In recent years, ASD (Autism Spectrum Disorder, which includes Autism, Asperger’s and PDD-NOS) awareness has risen, but the range of impairment under this acronym varies a lot from child to child. This big umbrella diagnosis encompasses children from the non-verbal, aggressive, severely handicapped to the suicidal, clumsy, shy kids. Practically every ASD case has to be viewed as an individual combination of traits, though there are similarities: obsessive-compulsive behaviour, social awkwardness, transition issues, anxiety or raging temper-tantrums – often not all at once, but in various combination.

Asperger’s is often seen as “the Geek Syndrom” and claims are made – postmortem – that many famous people were Aspies: Mozart, Kafka, Nietzsche, Van Gogh, Newton, Einstein!? Because of this widely accepted view of Asperger’s as an indication of above-average intelligence, a confession of the diagnosis is often followed by the – expressed or implied – question of “So what’s his/her special talent?”.

Many parents are baffled, even embarrassed by this question. Not every Aspie is a genius and not every genius is an Aspie. (There are no studies out, but many of the spelling and geography bee contestants are clearly on the spectrum, but that does NOT mean only autistic minds can achieve highly specialized memory skills).

It seems that adults/parents are more willing to forgive deficits in social behavior, if there is another talent, especially if it is academic. This, however, is not the case for children. They do, mostly, not forgive aberrance of the norm – be it a deficit or a special talent – and the inability to read social clues and/or unwillingness to participate in the game that is school yard politics, marks most ASD children as outcasts.

An Asperger child is often a loner, by himself in the corner of the playground – which is fine as long as they want to be. The parental heart-break starts when you watch your child desperately trying to make a connection, only to be rejected or get ridiculed. Worst are the moments when you realize that the attention other children were paying to your child and which you were so happy to hear about, turn out to be mean, ridiculing and disingenious, but your child was not able to identify the difference. Reading social clues, something that comes natural to most of us, is hard (sometimes I even think impossible) to teach and requires patience of all – child, parent and possible friend.

It is hard to gauge as a parent how much you should help your child to form these bonds. Should you make playdates at your house desirable with the best toys, the greatest foods and the funniest entertainment? Or is that bribery? And most importantly, will the other child see through all this and come for the gimmicks, but ignore you child just the same outside of your home?

Blessed are those who have a sibling than can lead and defend or who find a friend that is willing to accept quirkiness.

Coming up in the next blogs (so please subscribe to this blog): Family life & ASD, biomed, transition issues, special diets, IEPs …and how to find some humor in it all!?

Introduction to Asperger's Sydrome, help and support by a teacher and mother of 2

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