Explaining death? Easy. Explaining not existing before life? No so much.

By on January 9, 2013 in Autism, Parenting

brothersMy boys, Cameron (7 with autism) and Tyler (5 without autism) often have conversations about when they were babies. They’re obsessed with talking about what they did as babies or what babies do and at what age they started doing things.

This morning, we were talking about an old television show that we all used to watch when they were babies and the strangest thing happened… Cameron was convinced nothing had happened before Tyler was born. In his mind, he was always and will always be 2 years older than Tyler and therefore he could not have been around at all until Tyler was born so that he could be 2 years older.

It’s a weird one to wrap your head around but in a weird way, from his point of view, I sort of get it. He relates almost everything in his life to how old he and his brother are. Because he’s 2 years older, everything he does is at a higher level or done sooner. But always with his younger brother.

So when I tell him that he was 1 and we would snuggle on the couch to watch television, he asks where Tyler was.

When I explain to him that Tyler wasn’t here, he wasn’t born yet, he didn’t exist yet… I get a chill from the emptiness in Cameron’s eyes as he looks at me like I had just explained quantum mechanics to him.

He doesn’t understand it at all.

Now death? Death he gets. You’re here… and then you’re not. You stop existing. You go to heaven, you go to sleep forever, you just blink out… what ever. I don’t think he’s given it much thought but he understands that once you’re dead, you’re gone.

But to not exist before you, well, exist, is an incredibly difficult concept to digest. How can that happen?

I think it’s especially difficult in that they’re 2 years apart, making it impossible for Cameron to remember life without Tyler.

It’s not like a quick birds and the bees talk can fix that either. Because in his mind, Tyler was and always will be there. Whether he’s satisfied with “he was still in mommy’s tummy” or not comes and goes but for the most part, I don’t think I can ever convince him that we did things before Tyler ever existed.

The scientific, logical side of me wishes that I could explain it better or help him to grasp it better or even, which is wrong of me, that he could be smarter so that he’d get it. I know he will one day, 7 is still young but hey, we wall want a Doogie Howser for a child.

But the more emotional, sentimental part of me is quite happy with him thinking of his brother as always being there. They’ve always been together and hopefully always will be. To him, there is no life without his little brother and I’m quite fine with that.

If Tyler had to be -2 when Cameron was born, then so be it. So long as they’re in each other’s lives.

Comments { 2 }

Autism: An Informative Study/Guide

By on January 6, 2013 in Autism

Autism is a complex neurological disorder of human beings which include different impairments in social and communicative study. It is mainly caused due to connections of the nerve cells in the brain being different than in an average human. However, that does not always result in a derogatory condition. Indeed, it has been observed that while most autistic people have an inability to communicate properly with the society, their non-verbal and cognitive skills are far higher than any average person. These include various fields like drawing, music or their capability to learn new things. Autism can be recognized in the first three years of any child’s life.

No two persons in autism have the same behavioural pattern. That is what makes autism so difficult to control. Autism can be classified into various forms including the Autistic Disorder, the most common form of autism. This is characterized by inability to communicate verbally and performance of repetitive behaviours. In Asperger’s Syndrome, people are characterized by often high non-verbal test IQ, but possession of limited interest in society. For girls, Rett Syndrome is the most common form. These girls start normally, but by 1 to 4 years, they develop signs of autism. Pervasive Development Disorder (or PDD) is used for children who do not fit into any known categories. Along with these, another term common in context to autism is Childhood Disintegrative Disorder, used to classify children who develop normally for 2 years but regress after that.

The Genetics of Autism

Autistic children can be taught to behave normally with people by repetitive advices on how to interact properly. It has been found that autism is more common in identical twins who share the same genetic blueprint than in fraternal ones. The concordance rate in monozygotic twins is between 60 -90%.  This means that monozygotic twin studies, autism appeared in both twins in 60-90% of cases. Autism is undoubtedly connected to genetics at some level, however as recent studies have found out, 20 of the normal genes found might be involved. Various genetic tests are under way to determine the exact mutations responsible for the condition and scientists have identified several genetic abnormalities in autistic people. Dealing with all variations of such a large number of combinations is highly time consuming and hence, the exact cause of autism has not been determined yet. Two genes identified and linked to the condition are Engrailed 2 (EN2) and the Serotonin Transporter.  EN2 abnormalities are linked and believed to cause structural changes in the cerebellum, a part of the brain related to motor skills and cognition.

Genetic DNA testing and analysis of the human genome has classified 98% of our DNA as “junk DNA”. Whilst the term is misleading because of the connotations of the word “junk”, we simply do not know what purpose junk DNA serves.

Associated conditions:

  • Autism is often seen alongside fragile X syndrome, a condition caused by abnormalities on the X chromosome affecting males more than females and often resulting in mental retardation.
  • Although rare, autism also sometimes manifests itself in individuals suffering from tuberous schelorsis.

Studies have pointed that parents with schizophrenia are more susceptible to autistic children, and the chances of autistic children having a new pair of genes missing, as compared to their parents, is huge. Flu or fever for more than a week during pregnancy can also double the chances of bearing autistic children. Though no fixed treatments for autism exist, early treatment of diagnosed children have often proven to be helpful.

Comments { 0 }

The start of something finished

By on January 1, 2013 in Autism

Well, 2012 really sucked for the world of autism. Between 50 cent and his dumbass remarks on twitter, doctors placing a lower value on an autistic life, Jenny McCarthy calling autism moms “victims” if they aren’t trying to find a cure and what has to be the absolute worst, the media attempting to find a correlation between the Sandy Hook shooter and Aspergers.

Even for me personally, it really sucked as my wife decided we need to get a divorce… just before Christmas.

The good news? The past is the past. 2012 no longer exists.

This is 2013 and things are going to change.

Ignorance is being forced to apologize, the only moms that are victims are the ones that believe McCarthy’s stupidity. And the media were falling all over themselves with articles about how there is no connection between autism and violence.

As for Paul Corby and his heart transplant… I sincerely hope that the doctors received a good firm slap in the face and changed their minds. But I haven’t heard anything.

The autism community is getting the message out there. People are talking and when they’re wrong, there’s someone there to correct them.

Autism is not something to be feared, laughed at or used as a way to guilt moms into doing what you want them to do.

Not the media, celebrities, lynch mobs or even divorce can stop the wave that is heading towards governments, communities and audiences everywhere.

It’s a wave of truth, understanding, positivity and love that is a much needed set of emotions in this ever increasingly dark world.

It’s so easy to find the wrong information, to spread the wrong information, to be a hater and to ignore what you don’t want to hear.

But a force, such as the autism community is becoming, can’t be ignored and it can over come any misinformation that the media or celebrities can fling no matter how wide their audience is. In fact, the larger the audience, the more likely the backlash.

2013Don’t let up though. Don’t coast that wave.

Rise up out of your seat and correct those people that are getting it all wrong. Write and phone those media outlets, those celebrities, the government and anyone else that isn’t getting it right.

Shut down the haters, force the ignorers to listen and don’t give ignorance a free pass.

A lot went wrong in 2012 but a lot went right too. And I’m proud of most of the aftermath.

But more can be done. More can be achieved. More people can be reached. More that is broken can be fixed.

2013 might not be the end of the story but after what I’ve seen in 2012, I can see the start of the finish on the horizon.

People will accept all differences.

In the world around them, themselves, in our loved ones, in ourselves.

They’ll have to. Because we won’t stop.

And we’re just getting started.

Comments { 2 }

Perspectives on autism spectrum disorders

By on December 6, 2012 in Autism

Often, when reading blogs about autism spectrum disorders, I find sentences complaining about the impaired social skills; what should their kids become when it has impaired social skills? Likewise, the lack of or developmental delay in language in some kids, the lack of toilet training in some kids and further on make similar questions; what should it become of my kid? The standard solution posed has been diverse behavioral and educational therapies and pedagogics; the focus has been on training the kid to be as normal as he can be. If it works, the research still tell us little about. In any case, it confirm the view many have about autism spectrum disorders; something wrong with the kid which has to be somewhat fixed.

What, in reading such blogs, surprise me is the lack of question to the medical discourse which  lay the foundation for such a perspective on autism spectrum disorders. Being genetics as it is said, the world must have gone through a very fast and overwhelming phase of genetic change in the 1920’s if the diagnosis genetic statement is true. I find the genetic statement to be true, but I don’t find it to be true that the diagnosis necessarily raised in the 1920’s. I find it probable that it was first in the 1920’s the foundation existed to make this kind of identity to be converted into a diagnosis, and this conversion; from personality to pathology, is in need of reflection. If autism spectrum disorders once was a trait of personality, not posing any trouble but contributing to diversity, why is it today such a problem with it? Why is impaired social skills, lack of or developmental delay in language, lack of basic skills like toilet training and so on a problem?

The answer lies all in our perspectives on autism spectrum disorders. Confronted with the ever demanding western world we often jump on the barricades to be as prepared as we can in meeting it. Good social skills, we think (automatically often) are needed for making networks; both personal and economical, being included and not teased by others and so on; it is as it is our glue in the society, making the fundamental bond between us. Lack of language and toilet training, we think as well make a problem in relationships and it also must be a pain for the kid; because it is a pain for the parents to communicate with a kid without language and changing diapers the whole life. But the biggest case is that the kid bear the label of autism; a label called an epidemic and made as worse as cancer, a sickness which the kid manifest to such a degree that it can’t be any good to it other than its medical discourse. In this perspective we miss some fundamental questions, and that is questions about the terms itself: What does social mean? What does lack of or developmental delay in language mean and what consequences do it have for the kid seen from the kids perspective? And is lack of toilet training as worse as it is pictured?

The french philosopher Michael Foucault called empathy a sort of relational power, the german philosopher Ludwig Wittgenstein made social skills into a game mechanism and the german philosopher Jürgen Habermas divided the social world from the natural world. Jean-Jacques Rousseau, a french educational philosopher, proposed to say that a kid should not have social contact before the age of 16 since social contact before would coloring the kid so much that it lost himself completely. The french philosopher Henri Bergson concluded that social skills are the solution to the question of free will as it removes it. Many more philosophers has had something to say on the question of social skills; theories which are important to consider when the negative thought who say that impaired social skills are a disaster come up. The background for this thought may find it way back to the antiquity, where both Plato and Aristotle reflected on how to be good; how to do the right things in life. Plato found this to be a part of the true nature and something which all humans had as part of themself, but as something which needed educational training to be revealed. Aristotle on the other hand found not the case that all humans have it, as all humans are unique, but also he concluded that education may learn the human how to be good. In that time of age social skills was what made human doing the right thing. The glue of the network was in that time of age love. Today social skills has converted to both be a question of moral and ethics, and the glue of the network, and love has transformed into a sexual value.

Regarding language skills, which both philosophy of language and linguistic has its primary area, one could have done the same kind of philosophical journey and concluded with it both as bad and as good. Language could have been posed to being the borders which don’t make us in touch with neither nature nor God, and it could have been posed as the skill who make us human. And as well with other basic skills; in the way of philosophy and history human skills may come up as both negative and positive skills, and that is important to take into account.

The autistic person is very found to be under the influence of others; yet their will to original experience would have an influence of their choice. If only negative labels are posed on their traits, they also will become negative to it because no other alternatives to choose from will exist. This negative perspective on themself may be an obstacle in life; making it harder to get a job and a independent life as it in the same time make them more susceptible to treatment. A positive perspective on the other hand, where the traits are posed as unique skills and independence, will make a kid with autism spectrum disorder strong, he may make success in work life and he will be independent. He will also be more inclusive and caring, but he may not be very susceptible for treatment and a disaster to all health personals. The perspectives on autism spectrum disorders make the way for the autistic; impaired social skills, lack of language and basic skills do not need to be an obstacle; it does not need to be a pain for the autistic, it has all to do with the perspectives the autistic itself has on it, and that perspective has the environment a responsibility for.

Comments { 0 }

When a child with autism first starts to recognize bullying

By on December 3, 2012 in Autism

I find that movies are great ground breakers for my son Cameron as he tries to learn and understand social situations. We try to point out who is sad, who is happy and why.

ParanormanThis week, we watched ParaNorman for the first time. It’s a fun animated ghost movie where Norman, a quiet little boy, is able to see and talk to the dead.

This causes him all sorts of grief as the adults shake their head when he walks by and other children call him “freak” and laugh at him.

Near the beginning, introducing the main character and his life, he gets caught up in what the dead are doing, completely missing what his teacher is saying and the other children laugh at him. Other accidents happen, they laugh some more and it ends with him sulking away from his locker that says “freak” on it, for the second time that day.

It was at this point that Cameron, completely on his own, said “aww… poor kid.”

Now, I’m not going to get into the whole “do children with autism lack empathy” thing because, they don’t. However, one aspect that is quite common is the difficulty in being able to look at a situation from another person’s perspective. This is something that is difficult for all children. It’s just more so with autism.

When a child sees another child do something funny, they laugh. They don’t recognize if it’s embarrassing, hurtful or mean.
When a child sees another child as strange, odd or bizarre, they treat them as such.

Many times, it’s fully intentional and they truly are a bully. But sometimes it’s simply a lack of understanding that what they say and do is so hurtful.

I find, the best way to teach Cameron that what he says and does, while funny to him, could hurt someone else, is to show him from an entirely fresh perspective, as a 3rd party.

And that usually works to a point. He sees it, recognizes it… doesn’t truly understand it.

So when this part in the movie came on and he not only recognized the bullying but expressed his emotions about it, I was a bit shocked.

Of course this sparked a whole conversation with him about bullying and how bad someone can feel when you call them names or laugh at them but not as a lecture but rather, as something he was starting to understand and even explain back to me.

For any child, this is a great step. For a big brother, this is a momentous occasion, especially for his little brother. And for a child with autism… this is huge.

He gets it. And he expressed it.

I’m very proud of my boy.

Comments { 2 }