Sunday, 15 July 2012
This post is derived from my last post “Mothers, Let’s Not Judge Each Other” but is more directed towards autism and how parents of autistic kids are sometimes judged by other parents, even verbally accused of being inadequate parents in some occasions. This may come as a surprise but one has to consider the many ways autistic kids and their way of expressing themselves differ from that considered “normal” and “socially acceptable”. And when someone diverges from the norm, it unfortunately often brings out judgmental reactions from others. So what is there to be done?
Most autistic kids have some characteristics that are considered unusual in the very least. It can vary from lack of eye contact, repeating words over and over again, having difficulty sharing toys, keeping to themselves and not playing with other kids, indulging in repetitive play such as constantly turning the wheels of a toy car without ever driving it around or pouring sand between their fingers in the playground without building anything. This comes out in countless different ways and if someone does not know the signs of autism and doesn’t realize that the child in question is autistic, it could easily be perceived as a rude, spoiled brat that doesn’t listen anyone, particularly not the parents.
Another thing that has to be taken into consideration is that about 25 percent of all autistic kids are nonverbal and a much higher percentage have trouble expressing themselves and their needs vocally. Obviously, this can be a hindrance when it comes to communication as they are not equipped to express their longings or emotions. Additionally, 78 percent have problems related to sensory processing disorder (SPD) where things that most of us can easily handle, such as bright light, loud sounds, how different textures feel against our skin etc., can turn into a negative stimulus and become a major issue. Just imagine how you would feel if all the noises that surround us, such as people talking, someone laughing, cars driving and honking, the distant sounds of a building construction, etc., become equally loud. Wouldn’t you go crazy? Because I think I would.
Derived from all this, it should come as no surprise that autistic kids sometimes behave differently than that of typically developing kids. It’s simply because their brains don’t operate in the same way and are, perhaps, receptive to other things than that of neurotypical kids. As a result, meltdowns are not uncommon and the same goes for acting out vocally or even physically. Sometimes, it can take a very long time to soothe an autistic child if it has had a nerve-wracking experience. And reacting in an angry manner, scolding the child, usually only backfires. As such, parents of autistic kids often try to calm their children down by any mean necessary, sometimes by indulging them with something they like.
Unfortunately, all the above often leads to judgment from other parents who don’t understand what is going on and why the parents react the way they do. And the worst part is that most people don’t realize that the child in question has autism since autistic kids don’t look any different from other kids. As such, it is easy for people to reach the conclusion that these kids are simply misbehaving. That is exactly why the saying “I’m not misbehaving, I have autism. Please be understanding” has become a mantra within the autism community. Yet, I want to emphasize that autistic kids are not to be perceived as screaming little tantrum machines. On the contrary, they are usually very sweet and well-behaved. The tantrums are common, sure, but far from a constant. It is important for me that this message gets through as well.
Here is an excerpt from an excellent article by Austin Brown about the stress factors parents of autistic kids face. The article is called Hidden Stress: Parental Burdens Caused by Autism and was published on The Triple Helix Online on July 30, 2011. The article as a whole is wonderfully insightful (I personally identify with it on so many levels) and I highly recommend that you reed it, especially if you are a parent of an autistic child or close to someone who is. This specific excerpt is on judgment from other parents:
“Another cause of emotional distress for parents is the judgment issued by others on their child, and on them as parents . The lack of definitive, visible signs of autism causes outsiders to view autistic children as “normal”. Thus when an outsider sees an autistic child throwing a tantrum in public they pass judgment on the child. Since children are usually a reflection of the parents, this causes stress for the parents because they are being judged as possibly “bad” parents for not controlling their child or allowing them to throw tantrums in public . The judgment of the parents’ job by others causes stress because not only can the parents not control how their child reacts, they also realize that their child cannot really control many of his or her own actions.”
We as a family have been lucky in this regard and I can count it on the fingers of one hand where we’ve experienced explicit disapproval from others. Ever since our boys got diagnosed with autism, we’ve been very open about it and told those we socialize with about their condition in a matter-of-fact manner. People have been very understanding. However, the occasional meltdown is inevitable and it has happened a few times in the past year where we have been in public or among strangers and the boys have had tantrums and been inconsolable. Usually, when that happens, others just look at us with sympathetic eyes since this is, of course, not solely limited to autistic kids. From time to time, all kids act out and most parents know how unpleasant it is. But in between I have received disapproving looks, seen people shaking their heads, as if I’m an unfit parent. Only once have I experienced someone expressing their disdain out loud. I wanted to scream back that they didn’t have a clue what they were talking about but I didn’t as that would only have made my little boy more upset. So I bit my tongue and turned away. But I was mortified and I felt angry for a long time afterwards. Thus, it makes me so sad to hear that some people experience something similar on a regular basis.
I believe that the only way to counteract is to generate and encourage open and honest discussion about autism in society. In my opinion, that will slowly but gradually increase autism awareness among those who are not affected with autism personally and eventually lead to more tolerance and understanding towards those who don’t fit the mold. There will, however, always be people who don’t want to listen and will stay ignorant. But overall, I think that autism awareness is the way to go. That is one of the biggest reasons why I started this blog. Only a year ago, I was completely clueless. Only a year ago, I had such a wrong idea of what autism is. My assumptions were completely wrong. I was completely in the dark when it came to autism. And if I was this clueless, so are others. Hence, this is my contribution to increased awareness and I hope this post will be seen by as many as possible. In fact, you can be of help by sharing this post via email, Facebook, Twitter and/or other social media. Your support would be much appreciated.
Wrapping up, here is a nice little hidden camera video that shows an example of how people react to autism. According to this video, awareness seems to be spreading, it’s very encouraging. And of course, there are countless people out there who are compassionate and understanding. Hopefully, increased autism awareness only adds to that.