Tag Archives: Down Syndrome

Autism – “Will there be people like me in the future?”

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“They say, “We don’t mean people like you when we talk about preventing autism.”
As though I would feel better about them wanting to prevent my friends.
As though anyone thinks, in-utero, they would be able to tell the difference. This is a real question.
This is a real fear.

If you want to take me seriously, you have to take this seriously.

There is no respect for me, for people like me, for what reality is like for me, unless you think seriously about what “preventing autism” means when someone like me hears those words.”

This  was a question that was  asked in a post by  ThAutcast: Aspergers and Autism Community.

To me this post raises several valid, yet rarely considered perspectives and questions when it comes to the significant increase in the amount of genetic research now being done on Autism.

The last great medical/scientific/genetic break through that was spoken about in terms of prevention in such way  was  finding the genetic markers for Down Syndrome.This ‘break through’ has now resulted in the practice of regular screening tests for Down Syndrome being carried out on pregnant women.

As a consequence there are now far fewer babies being born with Down Syndrome.

You might want to ask yourself why it is that as a society we’ve simply just swallowed the need for such prenatal  testing to be done as a matter of course?

You might want to also ask yourself whether or not discovering a genetic marker for Autism will automatically be used  in the same manner that finding the genetic marker for Down Syndrome has been?

We all know that such ‘break throughs’ have been the ultimate driving force behind greatly decreasing the rates of children born with Down Syndrome today ?
Fewer babies born with Down Syndrome means fewer children and adults being born with a condition that many consider a disability yet others consider as simply being different.

 

If we can so blindly accept this form of ‘genetic cleansing‘, then we really do have to ask ourselves what form of genetic cleansing will be next?

Given the current amount of debate raging about whether or not Autism is a disability or simply a different way of being the world, one has to wonder just which side the debate the medical fraternity sit?
Actually heck no. We don’t even have to wonder about that one.  We already know that those within the medical fraternity consider Autism , just like Down Syndrome, to be  a Disability.

 

So given it’s already established track record of testing for and promoting the abortion of fetuses’ genetically marked out as ‘disabled’, why should people with Autism  feel as if they’re human rights are being  taken seriously when scientists and geneticists  begin talking about Autism in terms of prevention?

So what do you think when you hear the term ‘Autism Prevention‘?

Are you offended by it?

Do you see it as being a form of disablism?

If people were talking  about  human life in terms of  ‘fair skinned or dark-skinned prevention’ would you be offended by it?

Would you see it as a form of racism?

Questioning the backlash against parents within the Autism Community?

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Have you ever heard of a group of adults with Down Syndrome joining forces to name and expose the many obstacles placed in their paths while growing up due to negative parenting?

Now before you go there,  please don’t be naïve enough to try and say that adults with Down Syndrome wouldn’t have the capacity to voice such concerns  if they had them.  Many with Down Syndrome have strong intellectual capacities and are out-spoken advocates in their own rights.

Yet still, I can honestly say that I have never  once heard of such discontentment over parenting practices being voiced en mass  within the Down Syndrome community.

So  why is it I wonder, that such a constant stream of criticism over parenting  practices forms such a major area of  concern and contention within the Autism community?

Just why is it that so many adult Autists within the Autism community are so ready to paint targets on the backs of parents?

Is it because they’ve genuinely suffered hatred and cruelty at the hands of their own parents?

Is it because they’ve lived childhood’s full of loneliness and neglect, or experienced undue  parental punishments over misunderstandings such as not being able to look their parents in the eyes when speaking?

Or could it be, that proneness to being hypersensitive to negativity and critical instruction, which forms part of the characteristics of high functioning autism, is itself the reason why so many adults with Autism feel that their own parents let them down?

And if so, are they then applying their own personal experience as the template  to make the further claim that parents of Autistic children need to change their parenting practices?

If that’s the case, I think one has to reasonably ask, given the subjectivities involved, whether or not such a template is the right one to apply?

After all, times have changed, you only have to look at the image above to know that parents are genuinely out there trying to improve their children’s lives, so I don’t think it’s necessarily accurate to paint today’s parents with the same criticisms that arose in the past.

What do you think?

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

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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?

Disability, Special Needs, Differently-Abled, Autism, Asperger’s, Down Syndrome and Carers Connect Add your blog to this Open Sunday Link

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If you blog about your experiences of living with or caring for a family member with a  Disability, or write about Special Needs, or  describe and share the reality of being Differently – Abled from a first person point of view in your blog, then I’d love the opportunity to read and learn from your words.

So if you are an individual blogging about life with Special Needs or the parent of a child or young adult who is Differently Abled, or even the son or daughter of an elderly parent experiencing  a new way of life as a carer,  please add you blog link below so that we can find each other and connect within the WordPress Blogosphere.

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Turning the Tide on Hatred

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The Infernal Depths of Hatred

I read a post today from Posky at http://mattposky.wordpress.com/2012/06/19/achieving-social-repose-letting-others-have-a-gay-old-time/ that really struck a chord  with me.

As the mother of a teenager/young adult with Autism I am all too aware of the many prejudices that are out there, floating about in the stratosphere, for  no reason other than ignorance and the desire to judge others who hold  different ways of being in this world.

I firmly believe that difference of any kind should never be allowed to go unchecked as an excuse to engage in acts of discrimination and hate.

Posky’s approach to the levels of discrimination and hatred that many in the gay community face is one that not only shows the lunacy of acting out of hatred but also provides a platform that indicates the many personal benefits to be found in engaging each other from a place of acceptance.

I think his words on this matter translate just as effectively to those with Autism, Down Syndrome, cerebral Palsy or who experience any form of difference within our communities.

Here’s what Polsky has to say…

“Listen, it’s just easier to get through your day without hating people.

I can promise you that your own life will be richer if you stop worrying and just try to be cool with everyone.

You don’t have to go out and befriend anyone you don’t want to,

You don’t have to suddenly become an LGBT ally,

And you certainly don’t have to change your own lifestyle.

You don’t even have to change your opinion on homosexuality being a choice or not,

Because none of this gay stuff has anything to do with your life,

This is about other people.

You’re not in danger,

Your children aren’t in danger and your personal faith isn’t in danger.

You don’t have to be scared or angry about this.

There are a lot of other better things to be upset about, here is a short list:

-Overpopulation
-Wars
-Poverty
-Overeating
-Not dealing with your own problems
-Violent crime
-Diseases
-Drug addicted babies
-Inequality

Life is a struggle for all of us and the absolute least we can do is attempt to make it a little more bearable for each other.

Do yourself a service and take in the world as you see it,

Not as someone else has taught you to.

I am betting that, after a little practice, you’ll not only see things differently but more completely too.”

I completely agree with these sentiments and would add that, on the whole, people with Autism, like those in the gay community, are far from being either the biggest dangers or the largest economic drains in our society.

One really does have to question where all this hatred is coming from in the first place.

Is it based in religion?

I know much of the hatred that gay people face is indeed grounded in religious doctrine but what about Autism?

A brief history lesson reveals that the initial shunning and demonization of those with conditions such as Autism also sprang from the barren ground of an unforgiving religious belief that  those who were ‘mentally affected’ were possessed by the devil.

Isn’t it time to put away such childish notions?

Hasn’t science shown us enough now to persuade even the most zealous of  believers that these concepts have simply never been true?

They were born out of ignorance and superstition.

So why on earth are they being carried on today as if they held any rational meaning what so ever?

Just why is it that people who are said to have so much belief in a benevolent God seek to judge, condemn and harm others in such a fundamentally flawed way?

What is it exactly that they fear they will lose if they open their hearts to acceptance instead of hatred?

A seat in heaven?

Well I’d have to say, going by the amount of transgressions that take place on a daily basis, such as lying, cheating, stealing, adultery, jealousy, envy and  greed, that gaining a place in heaven along side a God who is apparently unable to forgive even the smallest of sins, would be a long shot, even for the best of us.

On the other hand, if you want or need to believe in a God who is merciful and filled with compassion, then how about you start emulating those characteristics yourself.

After all, I’m pretty sure that somewhere along the way, it is also a fundamental doctrine within religion to ‘treat others as you would be treated yourself’.

So why not start today?

The Unheard Song

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Song time,

She signed.

Swaying her hands from side to side,

We are going to sing ‘Grandma’s Glasses,’

Her hands already  beginning ,

To mimic the form of imaginary glasses,

Raising her hands to her head,

She smiled them into readiness,

Before boisterously beginning to sing,

With her fingers signing along

She became a symphony of sighted sound,

An unheard singer,

With a silent song,

Performing the small miracles,

Of transitioning  children’s effort’s

From the world of  can’t to can

As each child’s hands,

Finally began,

Forming their fingers,

Like kissing twin O’s

In front of their own glee filled  faces.

These are the moments she lives  for.

The  snatching of seconds,

 When soundless lips,

First begin,

 Tasting the grins,

Of success.

True signs of life

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Limbs that move beyond intent,

Hold courage in the smallest movements,

All the words that they may never whisper

Belie the loudness of their insight,

As they call to you within their silence,

I am,

I live,

I fight,

These are,

The true signs of life.