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Explaining what it is like to live with a child with autism in the family is an almost impossible task. It is so comprehensive, pervasive, and forms such a fundamental part of everyday life that it is difficult to know where to begin. 

 Image: Dreamstime (with licence)


In this guest post, you read an anonymous consideration about everyday life in a family with a child with autism.

Yes, what is life like with a child with autism in the family? In short, it is mostly about keeping the stress level of the autistic child at a livable level, and constantly dealing with the consequences of this (often) being completely impossible.

During periods of particularly high stress levels in the child, which fortunately varies over time, the family practically lives in a war zone; where the child with autism can constantly and completely suddenly have emotional breakdowns and go completely locked in the situation. As parents, you try hard to find solutions to one impossible situation after another, and it is not uncommon for there to be only one solution to the various deadlocked situations: to wait until it passes. 

When the stress level has finally dropped, much may have been lost along the way. When the child with autism is finally ready, the moment is over. The chance is wasted. We arrived late. We did not come. We had to leave before it all started. The day was over.


Rigidity, routines and a hidden logic

Seen from the outside, it all seems pretty pointless. Why does the child behave like this? Why do parents' attempts at solutions not work? What's happening? On closer inspection, however, it always makes sense. The child does not lock up for fun. It always has a reason, but it can often be difficult to know the reason.

The family with a child with autism thus lives in a rebus. Sometimes we find the solution to the problems, other times not. Then it only helps to calm down, to reset, and to start again where you left off as soon as possible. Maybe we will find the solution later, maybe not.

Rigidity is a key word in our families. The child with autism has a rigidity, or stuckness, a rule-riding, and a pedantic demeanor that is unparalleled, and which can therefore be very difficult for parents who do not have autistic children to understand.

For the child, there are fixed rules, routines and a separate logic for the most part, and this logic is not open to input. It is carved in stone, and if such patterns are to be broken, powerful tools are needed. And time. A lot of time. 


- It is impossible to hurry up

The rigidity of the child shows itself through large parts of the day and in diverse ways.

For example: It is impossible to hurry. Things take the time it takes. Getting out the door takes the same amount of time no matter what the situation. The sequence of ending the Ipad game, moving out into the hallway, putting on shoes and a jacket, and getting out of the car takes just as long if you are out early or late. Should one be so unlucky as to point out that we have a bad time, this could be the routine break that raises the child's stress level, and which makes it all take even longer than usual. 

You should be good at counting to ten as an autism parent, and to breathe deeply with your stomach.

In almost all situations, the child has his usual way of doing things, at fixed times and through fixed procedures, and when this way does not work, yes, it is still used.

Changing behavior can be a long-term project, and there are no shortcuts. What other children learn from themselves must be practiced, over and over again - and it's not just "demanding" of the child that "now you have to hurry", "now you have to quit", "now you have to make sure hang up that jacket ", and so on. Believing that there are quick fixes is a guarantee of failure, and that what is already bad will only get worse.


The constant collision between the child's expectations and the world

The world has a large margin of error. It is impossible to predict everything that will happen. The child with autism, on the other hand, has a small margin of error. And this characterizes the everyday life of us who have children with autism in a sometimes dramatic way.

The constant collision between the child's down-to-the-smallest detail expectation of what is going to happen and not happening, and what is actually happening, means that the child's stress level is almost constantly at the breaking point. This absent tolerance of the child to withstand changes in plans or breach of expectations must be constantly compensated with an even greater flexibility in the adults.

Matches must be chosen carefully. The small, daily struggles that are common in normal families - and which many (incorrectly) think of as synonymous with the term "upbringing" - must often be chosen away. For very good reasons. Then it dares that people around look indulgently at the whole thing and think: - For an uneducated child! - For some forgiving parents! - It is no wonder that the child behaves so badly, when the child is set so little limits for.

We must choose to ignore the opinions of people who do not know our situation, who do not have knowledge about autism. We already practice balance art at a high level, and what other people may think about something they do not understand, is just a distraction. There will be a gust of wind while walking on a tight line; the only sensible thing we can do is to ignore it, and to focus on the piece of balance we are working on.

As a parent of autism, you can not care so much about the eyes of others.


The alarm goes off again!

The impossible everyday life with autism is about constantly trying to improve an already very-many-times-worked-out structure of everyday life; it is about trying to anticipate every conceivable and unimaginable possibility of what may arise and which may be perceived as something unforeseen by the child; it is about trying to always be just as calm, balanced, solution-oriented and patient in how we handle the child's stubbornness, rigidity, anger and defiance. And no matter how hard we try, sooner or later something goes completely wrong. 

Then the world collapses for the child with autism, and the catastrophe alarm goes off in the inner world to the parents. When the child's behavior locks in the worst, it is not uncommon for it to lock in one muscle or two in the parents' stress neck. It costs money to be a parent, and not least to be the parent of a child with autism.

The despair that it will be impossible to move on when everything is locked, we hardly notice anymore. It is constantly being suppressed. It can hardly be called an emotion, but has become a condition we live under. Expressing despair over the child and his behavior does little good. On the contrary, the focus must always be on what we can do differently, what may be the reason why it went wrong, and what measures we will focus on from tomorrow. 


The reality is different from the one you see

Fortunately, we often succeed. We achieve something that in other families is taken for granted, but which in our families must be considered small victories in everyday life. We get the child to play football, to go on a visit, to get in the car on the way to school, to take a shower, to go to the bathroom to start the laying routine. 

Seen from the outside, it all seems so simple and normal. Seen from the inside, it is an invisible battle, and an ever-imminent threat that the smallest thing can cause everything to collapse.

When we have won such daily victories, and show ourselves among the world out there, we can hear comments in the direction of "I can not see that he has autism. He seems so normal." "He's really had a great development lately; it's so great to see." These are well-meaning encouragements, but we do not listen very well. 

The reason is that the reality is usually different from what people out there see when they only get a glimpse of a snapshot.

Autism is a serious disability. In many contexts, autism is an invisible difficulty.

Autism is a pervasive developmental disorder, and it structures family life in an equally pervasive way. 


A continuous effort for improvement

And then we fail again. And the only thing we can do is put on our research glasses, and try to understand why it went wrong again; which part of the family regime needs to be improved; how we can contribute to the stress level of the child again being able to lower itself to a level where the daily routines can be carried out.

When we think we have found the solution, we can breathe a sigh of relief for a short time, but it does not take long before the situation changes, and the solutions that worked yesterday are no longer valid. Then we must reset again, and enter the silent war, which no one can understand who has not lived in it himself. 

Trying to explain what it is like to live with a child with autism in the family is, as mentioned, an almost impossible task. But if you can sometimes feel something of the same that is described in this text, then maybe at this moment you can understand how we feel - every day. 

- Anonymous

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