The guilt and isolation of Autism

The power of knowledge

Having had 4 years of living in an Autism bubble you would think that it gets easier to manage the trial and tribulations that come with it. However one thing that never gets easier is the guilt. The pain you feel when you feel like your losing control or the passing of judgement from people around you who are meant to have your back or at least understand. But the issue with that is that not everyone around you is invested as much as you in understanding your child or making the world an easier place for them to live in. I feel that as parents we only want what is best for our children and love them unconditionally no matter what. That is the way that we bring up the boys. They may not have the same future and children their age and they may not have the same life goals but they will be loved and encouraged to be what or whoever they want to be. That being said, it is a pretty universal thesis for most loving parents. However when we say “We want our boys to be whoever and whatever they want to be” the people around us may not have the same understanding of what that looks like for a child with Autism. Autism is a spectrum condition so it can vary from person to person, which makes it even more important to understand, listen and spend time with that person to allow them to grow without passing judgement.

Don’t get me wrong, we are very lucky with the patience of people around us that they accept Ted autism, however it is much more than ACCEPTING it!!!! You have to try and understand what life is like through their eyes and try to accommodate that. This is a full time PHD style analytic life time project for us as sometimes it can be like reading a rock and trying to hypothesise what it is thinking or why is it like that, but like anything, if you have love and passion for it, you will take the time to understand and to develop your understanding. But that is a tough ask for some people. To take the time to understand and to allow him to live without judgement.

I have immersed myself in learning about autism and sensory processing, what certain behaviour may mean or why he may do certain things. It has taken over my life, however it is worth it to allow him to have a quality of life and allow him to grow. However passing comments and comparison to other children of a similar age CRUSH MY SOUL!!!! it may not be said in malice but the comments are like flaming hot spears that impact the very essence of my parenting and my motivation and will to put on a brave face each day. Comments such as “He is addicted to that tablet”, “HE should be doing other things that kids his age do”, He shouldn’t be in nappies any more” or “You should do more stuff with him”. Comments like that are a bitch for any new parent muddling their way through parenthood without a manual just looking for any peace or solace in their existence, but when people closet to you who know that he has Autism make them comments it angers me to a point where they should know better. They should understand the whys to those questions why he doesn’t fit the “typical” mould.

We have some friends who have children of their own and we visit them from time to time for a catch up. I can honestly say that they are AMAZING and invaluable as friends. They allow my boys to do what they need. They allow them to be free, to spin in circles, to hide in a corner or to just rewind the tv to watch the same 2 seconds or audio because it makes them happy, smile and be calm. There is no judgement, not comments and no issue. They just want them to be happy and comfortable. Their girls have known them since they were babies and they have been welcoming. Running around with them, understanding that they may need time on their own and just sit in a space near them. My friend told me that one of her girls had asked why Ted doesn’t speak and she was open and honest with her. Obviously it is unusual that he doesn’t speak or doesn’t want to partake in play or doesn’t enjoy social interactions but they watch out for both of our boys to make sure that they are safe and happy. What more could i wish for from a 5 and 9 year old. I just hope that the world is full of people like these two as they are amazing and will make the world a better place. For that i thank our friends for allowing us to be just a normal family for a few hours.

I am not asking for people to be experts in what makes our boys tick but i am asking that you take the time to be with them and understand a little why they behave in a certain way and why they NEED to do certain things. The world is a very confusing and frustrating world, especially for Ted. He has no way at the moment of communicating his needs and is in essence being forced to conform to certain ways that he does not understand. If you ask a child to wait in a queue for example but they are eager to get into class, you can explain to them why you have to wait, how many people are in front or how long it is going to take, but with Ted all he understands is that the route we take to school is the way we are going and then when i get to school i go in the class. He can not understand the reason for waiting in a queue or why i am holding him back when someone is having a natter at the front. All he can see is that the door is open, I’m at the school door so let me go in. There are many other instances like that, which he has to navigate through on a daily basis and this can be tiring and very overwhelming. He can not control his environment, he is constantly faced with challenges and we all know what that is like after a long day at work or at home with the kids.

We all have ways of relaxing or bringing ourselves back to earth. We may do yoga, watch a film, do some gardening or even have a nice bath. We need it to self regulate and that is what Ted does. He needs to self regulate and do something that he knows and can have control of and that is his tablet. It an escape from the confusing world, its regular, predictable and comforting. For Ted he can sit in his own space listening to the same line of a nursery rhyme or listen to the pointless theme tune over and over again because its soothing. He can work his way through puzzles because he has memorised the configuration and whizz through all the levels, that is his coping strategy. So why should we be judged to allow him to self regulate? Why should we stop him from doing something that allows his to be “NORMAL” for a time.? We wouldn’t like it if someone stopped us from doing our workout because someone doesn’t approve. We all have techniques and activates that we do to relax us or as a sense of escapism from the hectic world around us but forcing our ideologies on a person we haven’t taken the time to understand is just cruel and frankly inconsiderate. I am not saying that he should spend his life isolated and living in a world of technology but what i am asking is for a little bit of respect and consideration that we know our child well enough to give him what he needs and when he needs it.

The bottom line…

I have a saying that i stick by, be a part of their life not just in it. It is easy to see a person now and again and think that you know them, This can be the case for many relationships, I have great relationships with people where i can see them a couple of times a year and it is like we have never been apart, but with a disability its wayyyyyy bigger than that. You have to be a part of their life, get to know them, learn to understand why they may behave in that way or why then need to self regulate. Autism is a bugger because their is no set of rules that you can follow to understand and with the absence of communication it can be a minefield and mixed messages of what you think is wrong and what is actually the catalyst of their meltdown. It is very easy to sit on the sidelines and see the “Typical” exterior to Ted, the smiling, giggling, happy and quirky little boy that is like a puppy waiting for a tickle but actually being a part of his life you see the frustration, the pushing the confusion he lives with everyday. The upset and helplessness we can feel as parents not recognising or identifying illnesses or sadness before it is expelled into aggression or distress.

Watching my little boy as i type sit by the window squealing with excitement whilst his repeats the same puzzle on his tablet over and over again fills me with joy, it fills me with confidence that we are doing something right and knowing in my heart of hearts that we are doing the best for him. Its not the strangers that upset me, they don’t know him, they only see a snap shot of whats going on in that moment, Its the people closest to us that put on a facade of being understanding and involved when actually they may not see what is in front of their eyes… A Family that at times is struggling, is hurting but doing the bloody best they can do to allow their children to live a life without judgement and are doing everything in their power to encourage their children to thrive. You don’t have to be an expert in Autism, all you have to do is spend time with a child, well actually any child to understand what they need to overcome hurdles and to lead a life of acceptance.