Autism Does Not Equal Sterility. Combating the cruelty and ignorance of the words of others.

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My son was returned home to me, pale and extremely subdued, after his weekend visit at his dads on Sunday afternoon.

 

I could tell instantly that something was very wrong, but when I asked him about it he just said that he wanted to go to his room.

 

So he after he’d been in his room for a while I went in to check on him.

 

iamsam3He was crying and watching the movieI Am Sam” on his computer.

 

The movie “I Am Sam” has always made my son cry.

 

Yet he continuously watches it because just like Sam, he too dreams of becoming a father one day.

 

His desire to become a father and experience the joys of raising a child has always been on the top of my son’s wish list for as long as any of us can remember.

 

Even as a child, he’d continuously express his desire to hold and care for babies.

 

His little hands would always be awkwardly reaching out toward the nearest person smaller than himself.

 

Anyone who truly knows my son also can’t help but know this one very important fact about him.

 

Because of this, I am the first to admit that my son’s relationship to the movie “I Am Sam” is a complicated one.

 

He loves to watch it because although it upsets him, it also fills him with the hope that fatherhood for him need not be an impossible dream but instead can become a reachable reality.

 

He relates to this movie on such a deep level because it is the only movie of its kind that portrays an adult, especially a man with an intellectual disability, as being capable of genuinely caring for others, of having a sexual relationship with another special needs adult, and most importantly, of becoming a loving and devoted father despite his own personal circumstances.

 

i am sam1

 

My son is clearly smart enough to know, that the story line contained within the movie, is not beyond the realm of possibility.

 

For this reason, he fears that one day, when he does become a father, there may be someone out there who will try to legally remove his baby from his care, as was done to Sam, by claiming that his status as an adult with special needs makes him an unfit parent.

 

Usually my son will watch the movie, cry and then come and seek reassurance from me that I will never, ever let anyone take away his baby when he has one.

 

This time however, he wouldn’t come out of his room and talk to me.

 

Despite my best efforts he chose to remain within the solitude of in his room all night.

 

This morning when he woke up, he looked even paler and refused to eat his breakfast.

 

Yet he insisted on going to College, as he’s just met a girl that he really likes and he said that he wanted to be near her.

 

Okay. So we get ready and we’re driving in the car when he suddenly breaks down again.

 

Only this time he’s not just silently crying the way he was in his bedroom the night before.

 

This time he’s physically dissolving into great heaving sobs of sadness as he sits in his seat right beside me.

 

I pull over and take him in my arms and ask him again what’s wrong.

 

It is only then that the awful truth finally comes tumbling, haltingly, out of his mouth and the cruel gravity of what’s been said to him whilst at his father’s house, hits me like a red-hot arrow straight to the heart.

 

408967_10150524201273318_535028317_9097053_1821249456_nOn Sunday, whilst they were alone, his father’s new wife took it upon herself to tell my son that he’d “never ever be able to have children of his own because he has Autism and his genetics are all wrong.”

 

He said she then told him to “stop talking about it because she was tired of hearing it and it’s never going to happen anyway so just get over it.”

 

Her words must have felt like bullets to him.

 

Delivered as they were in such an incredibly cold and cruel (and if I were a lesser person I’d also say a deliberately well calculated) way.

 

The impact they had had on him had quite literally cut into the very core of his being.

 

I kept my own sense of rage in check as I tried to calmly reassure him that ‘her’ words weren’t true.

 

Then I remembered that I had a letter from my son’s geneticist still in my bag from the week before. I grabbed it out and read the last line of it out to him……

 

“As we discussed in our previous visit, I look forward to seeing James again when he decides it’s time  for him to have children as there is no reason why his desire to become a father should not be realized.”

 

Fortunately for us, we had seen the Geneticist in November of last year and James had asked him whether or not he would be able to have children.

 

Though initially taken aback by the question, coming as it was from a 16-year-old with Autism and a chromosome deletion to boot, the geneticist answered my son by telling him that there was no reason why, with due care, he could not have children.

 

He also told him that the best way forward with having children would probably be to look at some form of IVF so that they can check any future embryo’s to see if they are carrying any chromosome deletions before implanting them.

 

The whole issue of IVF took quite a bit of explaining later at home, but I still remember the smile that almost split my son’s face  in two once the penny had dropped and the realization that he could truly become a father without causing any genetic harm to his baby finally hit home to him.

 

I tell you, never have I felt so pleased to have doggedly persisted in chasing down the necessary genetic screening tests for my son and never have I felt so relieved to have fallen down on my self-appointed task of judiciously filing away all of James important documents, as I did today.

 

My son sobbed some more as we sat there in our rain splattered car, then slowly, he lifted his head and warily glanced in the general direction of my face.

 

“You promise me I can have children?” he asked me.

 

‘Yes I promise’ I told him. ‘Look here it is in writing. In good old black and white. And you remember don’t you how happy you were when the geneticist said that you could have children?’

 

He nods and blows his nose. His tears slowly stop falling.

 

“So what she said isn’t true?” He asks one more time.

 

“No it’s not true. This,” I say waving the letter in my hand toward him, “this is true.”

 

“But she’s a nurse. She said she knows about this kind of thing”.

 

‘I don’t care what she is. She’s is wrong.”

 

Finally, as a parent, I had the ability to not only answer my son’s questions but to also defend his truths and validate the personal worth and integrity of his dreams against the erosion of harm and doubt that other people’s words of ignorance had caused him.

 

To prove it I hand him the letter.

 

He looks at it as if he’s reading it but I know there’s no way his vision is clear enough to read such small writing.

 

Never the less, he smiles.

 

Folds it up and asks if he can take it to College with him.

 

Normally I’d say no. Not till I’ve made a copy of it.

 

But today……?

 

Today I say….. Yes.

 

YES!

 

Because if nothing else, he needs a yes after enduring God knows how ever many hours of the cruelty of ignorance he’s forced to endure at his father’s house.

 

And as we all know, ignorance is the curse that those with Autism are far too often forced to deal with every day in our society.

 

The curse that follows you home and invades not just your outer space but your inner space as well. Silently shedding its doubts on all of your personal thoughts, your hopes and your dreams, long after the echoes of the words once spoken have disappeared.

 

E=MC + Beautiful Hair…What Happens When Einstein Isn’t Einstein Anymore? Exploring the risks of eradicating your child’s genetic imperfections.

Albert Einstein

It has been said that if we were really serious about breeding genetically perfect children, then chances are, we wouldn’t actually bother having our own children at all.

Instead we’d be harvesting the ovum of the most extraordinarily beautiful women we could find and combining them with the seeds of the most athletic and healthy men possible.

Let’s face it, we all, have flaws that we’d choose not to pass on to our children and yet this simple fact never seems to stop us from craving the chance to look into a babies face to see aspects of ourselves smiling back.

It seems that whatever we choose to do, there will always be those genetic trade -offs that we are willing to make for the sake of our own dubious genetic immortality.

These immutable human factors lead me to question whether or not there could ever be such a creature as the perfect human being?

Einstein for example, though arguably one of the most intellectually gifted men to ever walk the earth, had a less then enviable physicality.

He was thin and wiry. Short sighted and prone to migraines.  Hardly anyone’s current ideal of the perfect human specimen.

And yet…….. his intellectual prowess gave the world so much.

Even  under the guise of creating a genetically perfect child, would it even be possible to make another being like Einstein?

Or even better yet an Einstein without physical limitations.

An Einstein Perfecta?

Well, let’s look at this. We don’t know whether or not Einstein was on the Autism Spectrum but it has been suggested numerous times posthumously , that he was.

So hypothetically, if scientists find the gene for Autism, as they have done for conditions such as Down Syndrome, then the chances are, that in our search for genetic perfection, we may eradicate the potential for genius.

Already people have been selectively screening for gender, but what if screening  for sexuality were also possible?

Would the list of choices for embryo’s to eradicate then be boy, girl, straight or gay?

And what if you decided that you didn’t want to know at all? Would it be possible to put that particular genie back in the box?

So whilst it may seem easy to argue that you might trade -off just about any other genetic trait  in order to attain perfect health, the other trade-offs on that table are potentially of a much grayer shade of content.

So if you had to hypothetically trade-off  physical traits, skills or talents to gain the ideal child, which traits, skills or talents would you be willing to forgo in order to create  perfection?

Would it be color, shape or size?

Would you sacrifice intelligence for the sake of perfect health?

Or would  you be willing to take a pass on  things like perfect vision if it meant creating a child with  perfect pitch and a voice that could melt angels?

What about the more complex bargains to made like trading personality for intelligence?

Would you be willing to create a child you knew would have no interest in fun, sports or hobbies, yet an absolute devotion to Quantum Physics for the betterment of mankind?

What would your hypothetical genetic  trade offs be?

Autism: Cause and Effect- Are we confusing the issues?

For many within the Autism community any attempts to find a causal connection for Autism are seen as some form of insult . As if seeking answers in some way denies people experiencing Autism their identity or devalues their different ways of being in the world. For me as a parent I can tell you that this simply is not true. I seek answers because I  want to better understand how my son relates to this world.

I’m not seeking to eradicate Autism or cure my son. I love him just the way he is thank you very much. To my mind, if we can understand exactly what causes Autism (if indeed anything one thing at all does) and how Autism effects individuals then we can gain more insight into what it is our children truly experience and what it is they truly need, not just from us as parents, but from society as a whole.

Isn’t that worth knowing?

I think it is and I have to admit that I honestly don’t see  how seeking to obtain such knowledge  either denies an individual with Autism their identity or subsumes their right to be who they are,  as they are?

As parent’s we are usually the only voices calling for the rights of our children to be upheld in real world, day to day  terms.  As parent’s we are often also amongst the strongest voices demanding that society accepts and honours our children for who they are, however they are,  as they climb into adulthood.

As parents we are united on so many different fronts and yet the Autism community itself appears to be divided on this and many other issues.  To the point where parent’s  are now being categorized  as falling into any one or more of several different camps.

-Those who believe Autism to be a natural human condition and those who do not.

-Those who pesue the concept of a cure and those do not.

- Those who are anti-vaccine and those who are not.

- Those who feel the need to seek answers and those who do not.

I find these endlessly occurring divisions to be nothing short of futile when the main commonality that we all share is that we  love, accept and cherish our children, teenagers and adults with or without Autism.

There is simply too much confusion being generated by the insidious ways the debates surrounding the cause and effects of Autism are being framed up. The truth is that you can equally find yourself in all the above listed camps at one time or another.  As it is many of us have a foot in two or more camps.  No matter the juxtaposition at play no one camp can claim exclusive rights to either the experience of or understanding of Autism.

Despite claims to the contrary, no one is denying their child anything by seeking to love, support, and understand the aetiology of their child’s Autism.

To think otherwise is to follow the misnomer of division which equally creates and perpetuates the type of pure conjecture that many within the Autism community are currently experiencing.

Isn’t it time we all sought to support each other?

Just think…

If there were a definitive answer as to what causes autism and a clear logical pathway to understanding both the effects and  the experience of Autism….

What would it change?

Would it change the way you love your children?

Would it change the amount of love you have for your children?

Chances are the only thing it might change may be the way others in society respond to and understand your children.

Would that really be such a bad thing?

Reasons to Question Current Definitions and Understanding of Autism (part two)

Autism Awareness

In recent years there’s been a lot of talk about an Autism epidemic. The term epidemic is usually reserved for diseases/illnesses such as the black plague.

So is Autism then to be understood as a disease?

If so a disease of what…?

The brain?

The immune system?

The digestive tract?

Past studies have searched for a connection between both   immunological  differences, digestive tract disorders and Autism.  Andrew Wakefield’s discredited study is perhaps the most common example used in terms of this.  Yet whilst it has been well documented that Wakefield’s study, which attempted to provide a causal chain of evidence between digestive disorders, MMR immunizations and Autism, has been discredited, there is still a high rate of symbiotic occurrence between those who experience Autism alongside auto-immune conditions and gastro intestinal difficulties.

Though it has been common in the past to perceive sensory issues as only impacting on the externalities of bodies the persistent link between autism and food sensitivities and digestive and intestinal disorders indicates the potential to view the sensory issues of those with autism as a whole organic experience.

If we add to this understanding the unusually high level of sensitivities and reactions to medications, foods, materials, smells, sights and sounds  that those with autism experience we can begin to see an overall whole body experience emerging. One that does not just implicate either a neurological disorder or an immune system disorder but an entire body experience.

When viewed as a whole, the conditions those with autism describe experiencing indicate that the sensory issues they endure, may be occurring on multiple cellular levels of bodily interaction. This would suggest the validity of investigating how the multiple sensory sensitivities that those with autism express experiencing both internally and externally interact to create the complex and as yet poorly identified or defined, overall sensory difficulties and medical symptoms, experienced by those with autism.

Such an undertaking could potentially give rise to a holistic approach to the medical treatment and understanding of autism. It may also lead to the recognition that autism may not be a set of disparate symptoms, so long they are called a spectrum, but instead, a series of intimately connected and inter-related cellular experiences. This is an understanding that genetic studies are leading toward.

Genetic understandings of Autism are significantly indicating that Autism has a bodily impact far greater than once believed. Several studies are pin pointing specific differences in the ways in which those both identified with genetic discrepancies  and autism absorb key vitamins and minerals, such as calcium, within their bodies at a cellular level (- these studies center around CACNA1A karyotype and chromosomal deletions).

Differences in the ability to absorb key vitamins and minerals create physical, immunological and neurological sensitivities.

As far as I understand this form of research, Autism cannot not be said to be just one aspect of a wider auto-immune system disease. Nor, when sensitivities are taken into account can it be seen as entirely neurological if the same factors that influence absorption and digestion are at work.

So if Autism were to be classified as a disease then it would have to be seen as disease that affects the entire body, not just the brain, at a very advanced level.

A level involving the minute key elements of physicality found within mitochondrial and genetic cells.