In order to fully understand what Autism really is and what it means to live with a person with this spectrum, we are going to present to you different key points of the life process in which families can find themselves... Let's get to it!

The expectations:

When you have a child you ask yourself a thousand questions and mental plans about what they will be like, what you will do and what their future will be like . We always think that our children are going to go much further than we have gone, that they will overcome obstacles in their lives and that we will be by their side to help them. These and a thousand other similar thoughts pass through our minds.

After the initial fuss, you see how your child grows, and his development is observed with a magnifying glass . Any small gesture, any progress , no matter how minuscule it may seem, is analyzed exhaustively .

And then you discover that this development is something different , that not everything is as you expected, or as you had been told, or as you read in that great encyclopedia for new parents. Something inside you tells you that something is not right . And at first you don't give it much importance, but there comes a time when you tell yourself: This is not normal, something is happening here.

Strange behaviors:

Your child is not behaving as expected , something happened at a certain time. Every day there are 3 types of manifestation of autism : born, made and converted . And your child begins to exhibit a long list of strange behaviors, unforeseen behaviors:

• He has spontaneous laughs, which seem to have nothing to do with anything.
• He spends the day flapping his little hands, swaying, and frequently performs repetitive movements.
• He doesn't seem to interact socially with anyone, he doesn't even look you in the eye.
• You call him, but he doesn't answer you, nor does he turn around. Will he be deaf? You think . No, because hearing does hear, since some sounds make him very nervous.
• He is very clumsy and falls constantly, but he does not cry. Or he cries very little, and when he does cry, he presents inconsolable crying that does not seem to be related to anything.
• He uses his toys in a strange way, stacks them, aligns them, sorts them by shapes, colors... He doesn't know how to use toys.
• If you give him a car, he sits on the ground and can spend a long time turning the wheel, and staring at the wheel turning. Really, the things that spin leave you ecstatic.
• His babbling disappears suddenly, he no longer says anything, even the things he used to say, he no longer says.
• When he wants something, he uses your hand as an extension.
• If you point at something, simply look at your finger, and not where you're pointing.
• When you hug him he rejects you.
• He seems to be bothered by his clothes.
• Suddenly mealtime has become a drama. Getting him to eat is quite a challenge.

We feel that these types of behaviors or several of them clearly fall outside of normal development and logically alert us . They come to confirm something that deep down we already assumed. Something is happening to our son .

But sometimes the pediatrician tells us that he is in perfect health, that his physical development is above average, but in reality something is wrong with my son.

And meanwhile your family, friends or acquaintances tell you that each child is different , that the son of a cousin in the town did not speak until he was 5 years old and that these are normal things, etc. Basically everyone is clear that absolutely nothing is wrong with your child, and everyone seems to know an incredible number of cases of children who apparently had the same thing happening to yours and today, curiously, they are all people with outstanding lives. And Wow, they don't convince us! And since you are absolutely convinced that something is not right, you begin a long journey in search of answers.

The way:

When faced with strange behaviors, a long and exhausting journey begins in search of answers .

The pediatric :

As we said, unless you are lucky enough that your child's pediatrician has knowledge about neurodevelopmental disorders, the most normal thing is that he or she will simply give you the slip and think that he or she is facing another hysterical mother . « He'll talk, take him to daycare, each child has a different process... » etc, and when you are telling them about the strange behaviors they look at you with a certain condescending and skeptical air but they don't seem to have any intention of doing anything. In the end, and after much insistence and managing to convey some concern to the pediatrician, you manage to be referred to the neuropediatrics service. But you leave the pediatrician's office with some uneasiness, since you have had to adopt an extremely forceful stance to get them to listen to you, and once again you are assailed by doubts as to whether nothing is really wrong with the child and you are really a hysterical mother who sees things where there are none.

Referral to Neuropediatrics :

After an indeterminate amount of time, especially if you use the public health system, you end up visiting a neuropediatrician. This new professional is supposed to know about this aspect. If you are lucky and find a very good professional, they will not only give credence to your concerns, they will get to work. And here comes the next problem.

Medical tests :

The child must have an MRI, Evoked Potential test, Karyotype Analysis,... And for some reason all these tests are very traumatic, the child must be sedated and blood drawn at just 2 years old. And all this, in turn, generates a degree of guilt in you, a great uncertainty, you ask yourself questions like: What if everyone else is right and I am wrong, why have I put my son through all these? martyrdoms?

Internet

And to add some more tension, you start searching for information, but with questions that don't always get the right answers. Well, today it is somewhat easier, since the volume of information related to autism has multiplied exponentially in recent years, but sometimes you think if it is not for the worse. Since there is a lot of information does not mean that this information is good, in fact we can find real atrocities.

The diagnosis, an emotional blow:

After a long journey, searching for no one knows exactly what, the diagnosis finally arrives. They initially cover it with a euphemism called Pervasive Developmental Disorder (PDD) , which is a pretty bad definition, since the name itself is a bit of a misnomer. Although they tell you, trying to be as delicate as possible, that in reality what your child has is called Autism . And quickly the ground collapses at your feet.

Of course the information provided to parents does not meet the minimum needs. And basically they give you quite brief information, which you can include in the early care plan, which at the time consisted of 45 minutes a week, and which today has increased to the incredible amount of an hour and a half a week. Although they don't explain well what Early Intervention is.

1. The return home . But one of the biggest problems is that you go home with a diagnosis that you don't know exactly what it is, but the name makes you panic. You leave with less information than you entered. And when you return home you begin a frantic search for information, and if when you were diagnosed you were shocked, when you start reading you freeze.
2. Family support is usually not of quality . There is usually no valid family support model, no one informs you adequately, it takes forever to be able to sit down with other parents, who then each experience it differently. And as a result of this blow you enter a very difficult and complicated emotional state, and after a while (again late) someone tells you that it is called the grieving process... Does my son have autism? And what is that?

The duel:

This process can be very complex and of indeterminate duration. Furthermore, the couple tends to live at different speeds, which certainly doesn't help at all.

The phases of grief can be summarized in five large blocks , and although some people may even skip some phases or have extremely short grieving, in the end in one way or another we all go through this painful process. Are:

5.1. The negation

In the first phase, the normal thing is to deny what is happening. It is an emotional self-defense system . To think that everyone is wrong, my son cannot have Autism, that is something horrible, he has something else for sure and I will find the solution. Next, family and friends come to give their opinion. In reality, they still know less about autism than we do, but how to give opinions is easy because they give it. And for some reason we return to the typical stories that we had already been told in their day, that if so-and-so's son this, that if so-and-so's son that . That before this didn't happen because children were educated well (which is a subtle way of blaming us), that you should do this or that. All this amount of diverse advice, which does not have much support, ends up generating greater uncertainty in us.

5.2. The Rebellion

After the first phase, we made the decision to prove that everyone is wrong and that we are going to find the solution. We enter a kind of obsessive phase , where we start reading and reading and we really end up becoming intoxicated with information. The greatest danger of this moment is to end up hearing someone say what you want to hear. Here you start to receive people with some great videos of children who have been cured, of all kinds of systems to leave your new child. And from vaccines to food, they end up being to blame for what happens to your child. And this is what you wanted to hear, that autism is reversible.

Then you think that if this is so, why haven't they been awarded the Nobel Prize in medicine? And if they are experimental protocols, why do I have to pay? My son is not a guinea pig . And then you see that all of that is a fraud and you start to question everything again, including your life. And while you question everything, new fears assail you. What will be the future of my son? Who will take care of him? And faced with these and a thousand other questions, you once again deny everything and believe that in the end everything will be fine, that something will happen and you will wake up from that kind of nightmare in which you live.

5.3. The blame

It's your fault ◦It's everyone else's fault ◦It's the doctor's fault

Couple crises and the different speeds of grief begin. But you never wake up from that nightmare, so the process of searching for the culprit begins. And this is a very delicate phase, where the strength of the couple is tested, and the first person we blame is precisely our partner. That way, if it's your fault, I have some relief. Next we look for another culprit, and we return again to the bizarre theories, that it was a vaccine, that it was your family's fault...

Once the family faults have been overcome, the fault lies with the doctor, at the time of delivery they did something wrong and that is why the child is like this. And in this delicate moment is where the different speeds of grief are most appreciated. Even the way a woman deals with it is usually very different from that of a man. Or the explanations about the whys. This can be a very dangerous process. That leads nowhere and is also counterproductive.

5.4. The Depression

After all these previous processes, we enter depression, caused by emotional saturation , by exhaustion at all levels. Again, you look for answers, those that until that moment either no one gave you or you didn't want to hear. And reality comes back harsh and insistent to tell you that this is what it is. Finally you have no choice but to accept reality : my son has autism . And the pain that assaults you hurts so much that it is very difficult to bear it. While your heart shakes you see your son, and you realize that your love for him is unconditional, that no matter what happens you will be by his side. And you know that the road is going to be long and difficult.

5.5. The acceptation

Once reality is recognized and accepted, we begin a different process. Although the pain persists, we know that we cannot allow ourselves to be overcome by it and we begin to try to calmly understand autism itself. And you realize that in the entire previous process, you learned a lot, but you were not able to realize it. You have to plan for the future, and you have to do it now. And in order to do so we must be able to understand not only Autism itself, but our own child . Understanding their capabilities, their shortcomings, their needs, and a long list of things will help us decide what we should do, but from a place of serenity and acceptance.

The progress

Throughout this long process we have learned that each child is unique , that they have different needs, that have nothing to do with the children of other families. We have discovered the importance of communication, without it it is very difficult to move forward. Understanding what the child needs is vital to adapt the intervention. To work on their shortcomings and enhance their capabilities.

We have understood that if there is no stability at home, the child will not have stability. We have learned to live with a child who is neither better nor worse, he is simply different from what we had thought.

Learning to live again

To finish this first entry we want a special story: "The Trip to Holland" by Emily Pearl.

She is the mother of a child with Down Syndrome who wrote a wonderful story about the arrival of a different child, and used a beautiful metaphor.

When you're having a baby, it's like planning a wonderful vacation trip to Italy. You buy a lot of travel guides and make wonderful plans: the Colosseum, Michelangelo's David, the gondolas of Venice... You even learn some useful phrases in Italian. It's all very exciting. After months of waiting with excitement, the day finally arrives. You pack your bags and go on your trip. A few hours later, the plane lands. The stewardess comes and tells you:

Welcome to Holland

Holland? - you say -. What do you mean by Holland? I booked a trip to Italy! It should be in Italy! All my life I have dreamed of going to Italy. But there has been a change in the flight plan. They have landed in Holland and you have to stay there.

The most important thing is that you have not been taken to a horrible, unpleasant place, full of bad smells, hunger and diseases. It's just a different place. Therefore, you have to go out and buy yourself new travel guides. You must learn a completely new language. And you will meet a whole group of new people you would never have met before. It's just a different place. It is calmer than Italy, less exciting than Italy.

After spending some time there and catching your breath, you look around... and you start to realize that Holland has windmills... Holland has tulips. Holland even has Rembrandts. But everyone you know is busy going back and forth to Italy… and they're all bragging about what a great time they had there. And for the rest of your life, you'll say to yourself: Yes, that's where I should have gone. That's what I had planned. And that pain will never go away, because the loss of that dream is a very, very significant loss. But… if you waste your life regretting not having gone to Italy, you will never be free to enjoy the special and wonderful things that Holland has to offer.

We promise you a second installment where we will delve more into what it really means to live with Autism.

Meanwhile, as always, we invite you to follow us through our social networks, such as ourFacebook group made up of many families who are in the same situation as you... You are not alone families!