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

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5 Comments

  1. 5kidswdisabilities said,

    February 5, 2010 at 12:29 am

    Great information on dealing with Asperger’s, slowly, gently and compassionately!
    Lindsey Petersen
    http://5kidswdisabilities.wordpress.com

    • 5kidswdisabilities said,

      February 5, 2010 at 12:58 pm

      I’m new, too…don’t have a clue how to have someone “subscribe”…maybe an experienced blogger out there could enlighten us!!!!

  2. February 26, 2010 at 4:18 am

    Tony Attwood, expert on Aspergers, said at a conference that those around the kid with ASD always end up being a bit like them, as it is far easier to do what the Aspie wants rather than to battle it out. I feel like I have become a bit of an Aspie, by being a parent of one. It is an ‘invisible straitjacket’ that we experience everyday and our world becomes smaller and smaller without us even really realising it. It is getting easier as he gets older. We all need a team of assistants to help us out on a daily basis – then we would have the energy to do all the things we think we should do. Thanks for the post.

  3. March 9, 2010 at 9:54 pm

    Hm hm.. that’s quiet interessting but honestly i have a hard time seeing it… wonder how others think about this..

  4. Jen in NSW said,

    April 20, 2011 at 11:37 am

    I live this. Even more difficult to deal with when your Aspie child is your eldest and is only mild with his obvious symptoms.

    I lost the little self confidence I had as a person and new parent when everything I instinctively did was a failure. I retreated emotionally from all the battles and had a really hard time relating to any of my children until as the second and third got older I gained confidence due to positive feedback when following my instinctive parenting methods.

    It still stuns me when another of my children will obey so quickly or can get dressed and ready to go in a reasonable time without input from me. It can be soothing to the soul to not have to battle over every little “rule”, to not have to explain myself all the time.

    I keep coming back to this post to read and remind myself that it is possible to teach him to “flex”, that he is not the centre of our whole family.

    Thank you,
    Jen in Oz


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