The Media's Portrayal Of Autism & The Truth
Over time I've come across a number of professionally made documentaries and news reports about Autism. In these programs, the host or narrator tends to emphasize one of two things: the savant skills or unique 'coolness' of the Autistic person being highlighted. They may touch on what makes them 'different' and then show some that are rather articulate and can pass for 'average'. That is fine, but there is another part - the one that is more common and not seen as often: the parent or guardian dealing with the Autistic person daily.
The general public assumes that Autistic children may have some little oddity and that's it - life goes on because eventually they'll out grow it, but it is not like that. Autism is a life long challenge. There is no cure for autism.
They have no empathy - so if you are sad they may laugh, if you are angry they might smile and conversely you may be happy and laugh and it might make them angry. When an Autistic person learns the correct approach to an outer emotional expression it is not because they have a natural feeling to do it but they learn how to react similar to how you would teach a robot. For instance: When daddy is sad he will shed a tear or look like 'this', you should not laugh at him.
Autistic children and the adults too demand that certain things go exactly the way they feel it should. If they do not get their way then they go into what people will consider a tantrum, however it is more than that, it is a meltdown, but I like to refer to it more like a "Hulk" Phase. Someone from the outside will believe your child is spoiled and wants their own way - that is not the Hulk Phase, during a meltdown the child is inconsolable and ignores reason for a period of time.
You know how the cartoon character of Dr. Banner turns into the green monster and when he does his logical perception becomes limited and he starts mashing up things, yelling and so forth? Well, that is what it can be like with Autistic children. You cannot reason with them and when they are in this phase they sometimes have to be restrained so they do not hurt themselves or others. Now you're probably thinking that's a worst case scenario - no it isn't. This Hulk phase can be a daily thing hence most of your day to day routine involves sweating bullets trying to fulfill their expectations in order to keep relative peace. Just like the Hulk - you won't like to see them when they're angry.
The most basic elements of life that we do each day without a second thought like: bathing, using the toilet, brushing teeth, eating and so forth are major daily events for Autistic Children (Some Autistic Adults as well). When it is time to do any of these things you have to walk over egg shells to ensure that the little green monster does not rear his ugly head. Now you are probably wondering what could be the big deal with those regular aspects of life... Let me give you a few examples:
At the dinner table probably the cup was not placed in the precise spot for them. The plate was given to 'X' person first instead of 'Y' person. You did not say a particular word before giving them their food. Yes, it can be ritualistic and if you get it wrong - trouble. What is more is that most times Autistic Children cannot communicate very well but the media tends to feature the ones that are more sociable and able to converse in complete sentences or even attend public schools. For the vast amount of cases I come across this is the rare minority. The majority have lots of life skill issues and can barely form whole sentences. Now imagine an Autistic child with communication issues trying to convey to you their need and you cannot understand. If you don't get it within the first 10 seconds from their limited vocabulary or hand signals then you know what happens - that's right - Mr Hulk appears!
Now, even when you think you've fulfilled all their wishes you're in for a surprise (Not really because you expect it). They start analyzing you - what you wear, how you dress, where you go and at what times. If they feel anything is not right based on their perception they may go into the 'Hulk' phase again. Therefore to do simple things you have to literally 'sneak' around your own home to get it done.
Autistic children and some adults cannot be left unattended at anytime. In many cases you cannot find anyone willing or capable to 'babysit' either so you must be with them at all times and in everything. In our own particular situation we have three Autistic Boys and though they are varying ages they all have the same traits as described within my Post. My purpose in writing this was just to give you a glimpse into what it is like to raise an Autistic child and in our case three Autistic children.
Please in another part of this Thread so you can know the other aspect of Autism most people like to hide. Do not ignore this, watch the video - you will then understand what many Autism Parents go through and what my life is like!
The main issue about all the situation is that not only the portrait made by the media can be deceiving, as you underlined, but also the perception that others have of the problem is not complete. I will bring myself as an example, because I can't talk for or about other people. I knew your situation, I knew it was not easy but I never imagined a scenario like the one you described. And not because of the false information spread around by certain subjects but because, as it happens in many other cases, everything looks different when you are not the one living it.
I have a very limited relationship with one of your sons here in the Forums, but still a form of relationship. I know about his problem, I read his blog and everything. But, if somebody asked me to express an opinion about him, I would say that he is not so different from any other child of his same age. I will tell you more. I consider him smarter than some of the kids that I met in real life, sons and daughters of friends or customers. Reading his posts in the various boards, playing with him in more than one game and having some brief confrontation with him at a generic level, I would even dare to say that he has better communication skills than some other members.
This is not for saying that I don't believe you, it would be utterly silly. Is for confirming how people that only sees the tip of the iceberg can't understand or imagine the mountain that lays underneath.
Good observations. Autistic children tend to look 'normal' and may seem 'normal' - we usually refer to this as being 'average' or neurotypical but it is the outer appearance than makes it difficult for people to accept what you tell them about autism because they will often say "He seems so normal!". Using my analogy above - doesn't David Banner too? Doesn't Dr. Banner excel in science and many things that may confound the average person and yet in the very moment something happens everything that is not average comes out and the green man appears.
Felipe has come along way. He could not speak anything until the age 6 and was not able to form a sentence properly until 8-9. It has been a long road but most of it can be attributed to Pandora's home lessons. The more detailed happenings in our life we usually put in our Private Member Blogs. What I give is a general view but Pandora has a more graphic Public Blog (needs some updating) into the world of Autism: Parenting Special Needs Children Blog. Also within this same Board: Psychology, Philosophy, & Special Needs has a button at the top labelled "Autism" If you click it you will see the related Threads if you want to study it more.
I saw already some of the threads about Autism but I didn't read your blogs yet: I will have a look at them. What I can say, from my limited observation point, is that you both did an awesome job with that kid. What surprises me most is that I always associated Autism with the difficulty of getting into relationships with other people. Felipe not only can create relationships but can be also active inside them. He answers directly to questions and reacts to situations, for instance in the games. He goes even further, ASKING directly questions about different subject which requires a certain amount of initiative and communication ability (he asked me a few times, for instance, information about the Italian national football team without me introducing the subject first, which pleased me).
Also the way he reacts to potentially stressful situations is positive. Sometimes he defends his opinions, sometimes he steps back recognizing his mistakes showing an emotional reaction that is complex and not only instinctive but born from reasoning upon what's going on. Moreover, he speaks English better than me which proves that Pandora really did a good job as a teacher (laugh).
I think looking 'normal' to the general public poses the biggest problem for Autistic people. If you look normal, its not that bad is it? That's why the media's portrayal is so basic, because they don't want to admit that a 'normal' looking person can have anything negative towards them. And the autistic children they always use are angelic. They're just a little odd. I haven't had much experience with Autism however I have had a few friends/co-workers over the years that had Asberghers Syndrome. This has been a real eye-opener for me and the way I've had to interact with them. My sister is a child psychologist so thanks to her, I was given an understanding of what problems arose.
My Daughter who is 11, and has Autism and ADHD, looks 'normal', I have seen first hand how the public sees her as 'naughty', or even just a bad tempered child. I witnessed this first hand last Friday, when normally I don't take her to shops as it turns into a total meltdown, but had to nip in just to get one item.. And that's all it took. As JB pointed out, she had 'a Hulk moment', throwing herself on the floor because she wanted something from the shop,. I tried to reason with her that when she had her pocket money we would come back, but to no avail.
So I thought okay, I will lead her out of the shop and sit her on a bench to calm down. ( I figured that if I tried to get her back to the car it would look like I was being physical with her, and if I sat in the car with her screaming like that, this would also look like I was being physical with her) so I figured sit her on a bench, leave a gap between us, and everything would calm down... But no! lovely members of the public called the police because my daughter was "Disturbing shoppers".. We had a 30 minute chat with the police whilst I pointed out that she had Autism and ADHD, and was under a Psychiatrist... Still not good enough.. We had to give our names to the Police, phone numbers and my daughter's school name, and they are going to give me a call this Friday to see if my Daughter has 'calmed down'!
It's really distressing that the media portray it so badly, that the public don't understand.. But you should at least expect a bit more understanding from the police!
It was really humiliating, and upsetting, and the worst thing is that I know it's only going to get worse, not better!
I'm all there for everyone being educated on Autism, whether it be in an adult or a child!
What a terrible experience. I can understand why you tried to delay, there are so many laws with regards to children in first world countries that it stifles you ability to handle a hulk moment without people taking it the wrong way. I deal with this each week and sometimes it can leave you so drained, and no one knows or understands what that is really like. To deal with this at home is one thing but in public - you may as well be on national news, because you can feel all the eyes on you. I'm in a third world country and you get the opposite here, I even got cues from old ladies to give my son a good whacking and to "Stop spoiling him". rolleyes
DianeC, are you living in the US or in the UK? It sounds strange to me that police will bother themselves so much to the point of checking on you again after a week to see if your daughter has calmed down. Anyway, I believe that being excessively protective towards children is mostly an [Anglo Saxon] problem. Latin and [Germanic] Countries in Europe are a middle way between this and what JB experiences in Trinidad. Nobody will say anything if you raise your voice and bring your child away being a little "Physical".
Personally, I believe that, with children that have no psychological problems, a good whack sometimes is an effective medicine. The important thing is that, just like shouting, it should be reserved to those very few and special cases in which something decisive MUST be done to stop dangerous behaviors.