Archive | January, 2012

Know your child is how you want your child to be

By on January 20, 2012 in Autism

Whether you feel that Autism needs to be cured or not, we’ve all had that moment where we thought our newly diagnosed child was doomed to a complicated struggle of a life and that they will never amount to what others see as average, much less the lofty goals and dreams we had before the diagnosis.

There is certainly nothing wrong with this, it is natural. It is a scary thing to have happen to you and to your child.

Less than perfect

For many people, that feeling of disappointment and fear of the future passes. Maybe not entirely, but for the most part. They learn to accept that their child is how they are and that they’re perfectly wonderful just the way they are. It’s certainly not without it’s struggles but parents take each day as they are and love their child unconditionally… no matter what.

Then there are those parents who hold on to that disappointment and will always fear the future. They see their children as damaged or defective and seek vengeance (or justice) on those who are responsible. They will never accept that their child was meant to be how they are.. and who they were meant to be was robbed from them.

I don’t know who is right and I don’t know who is wrong, I don’t know if there is a villain to bring to justice… but what I do know is that no child should ever feel that their parent sees them as less than perfect… much less broken or defective.

Few exceptions

Even a child that does not speak, does not engage their parents, does not play and has all the other “severe” indications of “low functioning” autism can sometimes surprise us. The right tool, device or incentive can help some of these people “find their voice” and show the world what they’re truly made of.

It makes many people think that a lot of autistics have it within them to do this. You, and they, just have to find a way.

If true (which I believe it likely is, at least for some), then the things you say, do and even think will be picked up and even understood by your child. Even more so if your child is able to express themselves and communicate better.

Even if you try to hide it, if you truly believe that your child is broken or defective, it will affect your child. Perhaps the parent is a little less affectionate, perhaps they’re a little less encouraging… these things will resonate with your child. It may be on some subconscious level or it may just be a hint of self doubt that lives within them into adulthood.

Few children are able to excel despite a parent’s disapproval, few children are able to truly be self confident when their own parents do not believe in them first. Some children can overcome that but doesn’t a child with autism have enough to overcome already?

perfection

Unconditional love

I’m not saying that you are wrong if you fight for a cure, I’m not saying you’re wrong if you are fighting to put a stop to what ever you believe is the cause of autism… what I am asking for is… please stop seeing your child as broken.

Accepting your child for who they are, right now, right in front of you… it does not mean giving up. It certainly doesn’t mean you don’t care. All it means is that you love your child, through and through, 100%, no matter what.

Know that your child is perfect, know that your child is who they are and encourage them to always be themselves. Know it.

Don’t just think it and don’t just make it something you say so that you can feel better about yourself for making them feel better about themself… you need to believe it. You need to know it.

This is your child and your child deserves that much from you.

Once you believe it, the real miracles start to happen.

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The Autism documentary that will completely and totally shock you

By on January 17, 2012 in Autism

A few days ago, I received an email from a man named David, an autistic from France. He sent me a link to a documentary called “The wall or psychoanalysis put to the test for autism“.

The documentary that you are about to see was not filmed in the 1940’s although you will think it was. This film, out of France, was released in September, 2011 by Sophie Robert.

In just 52 minutes, you will see the culmination of 4 years of investigations among psychiatrists and psychoanalysis practitioners in France. Robert met over 40 professionals in putting this documentary together and yet, now that it is complete, 3 of those professionals are suing Robert in an effort to have the movie banned by the court.

I don’t want to give it all away but you will see Autism described as madness, a result of incest (or incestuous needs), a mother’s failing, a father’s failing and so much more. You will see a family that lived with and against this system.

This is a french film which means that English subtitles had to be added and they can be difficult to read at times. But it is still very much worth it to watch this film.

Awareness is more than just making the world understand Autism… it also means putting the past behind us and making things right. And watching this, while it may be painful or frustrating, it is necessary.

THE WALL, OR PSYCHOANALYSIS PUT TO THE TEST FOR… by runmagali
(If it does not load, hit reload/refresh or click the link above to view)

Now that you have seen the film, please check out http://www.supportthewall.org/ where every effort is being made to stop the abuse of autistics in France.

Starting to get international attention, they are planning on holding a press conference on January 26th in New York City to launch an international petition against the abuse of autistics in France.

Coincidentally, that is also the date that Sophie Robert will receive her court decision… will the movie be banned or not?

Share this movie. The more people that know the truth, the sooner this “psychoanalysis” can be stopped.

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Humans are social beings. So if you’re not social, what are you?

By on January 16, 2012 in Autism

Taken from Wikipedia:

Humans are social beings. In comparisons with animalia, humans are regarded like the primates for their social qualities. But beyond any other creature, humans are adept at utilizing systems of communication for self-expression, the exchange of ideas, and organization, and as such have created complex social structures composed of many cooperating and competing groups. Human groups range from families to nations. Social interactions between humans have established an extremely wide variety of values, social norms, and rituals, which together form the basis of human society.

This makes me wonder… what about the people who are not adept at utilizing those systems of communication for self-expression? Is this why some people instinctively see special needs people as less than human somehow? Is this why, when a person is unable to use those systems, to communicate or demonstrate self-expression, they are thought to be “in their own world?”

It sounds a little harsh, to think that, if a person isn’t social, that society would view them as “less than human”… but really, this shouldn’t be new to anyone. Aristotle thought this way too.

“Man is by nature a social animal; an individual who is unsocial naturally and not accidentally is either beneath our notice or more than human. Society is something that precedes the individual. Anyone who either cannot lead the common life or is so self-sufficient as not to need to, and therefore does not partake of society, is either a beast or a god. ” 
― Aristotle

Granted, he included the “more than human” but that’s likely in reference to the savants or prodigies that lock themselves away to work tirelessly on what ever it is that they do.

I mean… a beast or a god? Really?

how to win friends

No wonder this sells so well!

Says Who?

Personally, I have always questioned: If everyone is different, why would everyone have to have friends?

Think about it. Every single person is different. All seven billion. And yet poets and story tellers continue to tell you that everyone needs someone to love and everyone has to have friends.

Why?

Why can’t a person be ok with not having friends? Where did the term “hermit” come from if there aren’t people out there who prefer to be left alone?

Feeling Lonely

Everyone feels lonely sometimes. People that have more friends than they can count can feel lonely sometimes. Is it more likely for a person that has no friends? Sure, but perhaps there’s a reason for that besides the fact that they are alone.

Think about it… why would a person who prefers to be alone be lonely because they are alone? It doesn’t make sense.

In my past, when I had no friends because I was working so hard, I felt very lonely and very depressed. But it wasn’t because I had no friends.

I felt that way because I was conditioned to. Every poem or story I read, every movie I saw, every person I talked to would tell me that I had to have friends…. more so, I had to have love.

Not one person or piece of entertainment told me that it was ok to be alone. In the movies, the hermits would eventually find a family or a place to live and “finally be happy” with others. The others would either eventually commit suicide or “remain alone for the rest of their days”…  ugh.

Be Yourself

Other than highschool peers, people will tell you to be yourself. That you’re unique. You’re different. There isn’t another person out there like you.

But you have to have friends, like everyone else, because everyone else does… or else you’re “beneath our notice”.

It’s very contradicting and it’s very belittling and it’s very confusing.

Sure, a lot of people without friends do not choose for it to be that way and therefore, have every right to feel lonely and a little down. But some people want to be that way… they eventually find themselves depressed and aren’t sure why.

In either case, don’t listen to Aristotle… don’t listen to the media, entertainment or poets… it’s ok to have no friends. It might be temporary. It might not. Depending on what you want.

But be yourself.

Who knows, you may think you want to be alone only to find that you really don’t… once you are confident enough to be yourself… confidence attracts… friends!

But you are still very much human, friends or not… love or not. Want it, don’t want it… it doesn’t matter, just so long as you are yourself. Friends and love, they’re out there. I won’t think any less of you for wanting them or not wanting them.

You don’t have to have friends to be happy but it certainly helps to be happy if you want to have friends.

So either way… be happy for being you.

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Misrepresentation within the Autism Community

By on January 14, 2012 in Autism, General

This is a very exciting time in the world of Autism… more and more, autistics are finding ways to have their voice heard, or give voices to those that have had no voice before. With the improvements in text to speech technology, the rapid increase in iPad apps and just general understanding in general… it’s amazing what people can do when they know what to look for.

However, this has also lead to some very heated emotions. People are getting very frustrated with each other.

Misrepresentation

John Elder Robison wrote : As the autism spectrum expands to encompass more people with progressively greater verbal and written communication skills, those individuals have begun speaking for themselves.  By doing so, they are altering the public’s perception of what or who an autistic person is or may become.
From:  http://jerobison.blogspot.com/2012/01/looking-forward-at-autism-spectrum.html

What he is saying is that Autism used to define a disability that left people speechless, unable to live an independent life of their own… but now, as it continues to expand, it grows to include people that are able to live independently. And that those people are advocating for Autism and giving people the wrong impression of what Autism truly looks like (intentionally or not).

Then there are those who are frustrated with people insinuating that only the verbal, independent living autistics are able to speak up… that all this time, those non-verbal autistics living with their parents or in a home were unable to advocate for themselves but would have if they could have.

Or that maybe those people that you are reading or hearing from actually are not verbal at all or living independently… even though you may have thought they were just because they are speaking out.

There are several autistics that are unable to speak or live independently and they are blogging, writing books, attending conventions and many other things, to speak on behalf of themself as well as others on the spectrum.

A great post on this: http://autistichoya.blogspot.com/2012/01/tired.html

Further still, there are those out there, parents and some professionals mostly, who maintain that while it is great that there are some who can live on their own and others who can perform these self advocacy tasks despite their verbal limitations…. that Autism is still very much a life destroying disability that renders a person a much lesser person than what they would have been otherwise.

These people feel that those attending the conventions, writing the books and otherwise “speaking up” are misrepresenting those that can not do those things. They feel they are giving people the wrong impression since there are so many that hurt themselves or others, that will never learn to read or write or speak and most certainly will never have a voice to self advocate with.

Is it really misrepresentation?

So who is right when there are so many conflicting thoughts? Who is right when people are so mad at each other that they actually get upset at the things they say?

This is simply my opinion, I wouldn’t say that you have to see things my way if you don’t want to… but I’d label all three parties as being right.

It’s not really misrepresentation when all three people are representing their particular view of the spectrum appropriately.

It is a spectrum after all and as such, there really are people who can live independently and speak perfectly fine, as well as those that can’t live independently but are still able to voice their experiences and opinions in alternate ways and then there actually are those who will never be able to do any of those things.

None of them are wrong…. except maybe in their effort to shut each other out or to try to convince others that their own view point is the only viable one that others must share.

disagreementThe true misrepresentation

So if none of the referenced parties are misrepresenting the Autism spectrum and/or autistics… then they all are. Their efforts to make people think that all autistics either have a voice or don’t… their efforts to make people think that all autistics have a voice… and their efforts to make people think that all autistics lack a voice or unable to speak for each other.

Autistics have the most important voice in the Autism community, some may feel that is debatable, but it is certainly how I feel. I mean, who knows about a topic better than the people who live it?

I think it’s everyone’s goal (at least I hope it is) that every person with Autism can be a self advocate… that every child/person will be able to speak up, should they choose to, in what ever way they choose to, to advocate for themselves.

I applaud those that speak up. It’s not an easy thing to do no matter who you are.

My only suggestion, take it or leave it, is to speak together… not against each other.

Don’t dismiss a self advocate because you feel their experiences and opinions don’t represent your child or your view…. one day that may actually be your child that someone else is dismissing and that will hurt you even more.

Don’t dismiss the person living with Autism in their lives who feels their situation doesn’t mesh with yours. Chances are, it really doesn’t. Maybe their child is just fine while you advocate for ideals that don’t match up, or maybe their child never will find a voice in any manner or form and your voice only reminds them of that fact.

It is no one’s intention to hurt each other or to misrepresent each other… it is everyone’s intention to educate and inform the people that have no idea either which way.

Yes, there are some advocates that are simply wrong in the things they say. They spread misinformation and speak contrary to facts. But there are times when two parties can be right at the same time and yet wrong at the same time for trying to make people think that the other party is wrong when what they need to do is speak together.

We must educate each other, since we’re all obviously missing some essential pieces of the pie. We have to work together for that to happen. Not against each other. Only then will any of us truly qualify to try to educate everyone else.

I would love to hear from you. Can we all work together? Will it ever happen?

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Low Functioning Autism vs High Functioning Autism in 2012

By on January 10, 2012 in Autism

There is a great deal of confusion surrounding the terminology simply because of how vague it really is… what exactly is “low functioning” or “high functioning”? Is it to be measured the same as the wattage of a light bulb or the complex calculable abilities of a computer?

For many people, as it pertains to Autism, it can simply be the difference between speaking and not speaking.. for others it can be a difference in perceived IQ levels.

Personally, I’ve always thought of the terms as indicators as to the level of one’s ability to be independent. Can they shelter, feed and provide for themself? Can they maintain a job? Can they “function” in the world on their own?

Whether or not that means using a device to speak for them, high or low IQ levels… what ever. It doesn’t matter… so long as they can live independently, they are “high functioning”. If they can not, they are “low functioning”. I don’t maintain that this is the correct way to think of these terms but simply that it’s how I think of them when I hear them or use them myself.

The reality is though that whether or not you agree with this form of terminology or not, you’re going to have to get used it. As of 2012, the discussion is no longer what it means or how to use it but whether you are using it pre DSM-5 or post DSM-5.

dsm-5Pre DSM-5

Up until the DSM-5, the Autism Spectrum Disorder has always been a list of common disorders such as Autistic Disorder, PDD-NOS and Aspergers Syndrome, which was added in the DSM-IV (IV is the roman numeral for 4).

That means that there really is no low or high level… there’s simply a different disorder to fall into. If you could live independently but struggled socially, you had Aspergers. If you had more severe impairments which left you dependent on others for life, you had classic Autistic Disorder. Others that fell somewhere in the middle would often be PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified)

That’s a very general description, it’s far more complicated than that but does give you a good idea.

This is where “low functioning” and “high functioning” terms often become a point of contention among experts, autistics, parents and everyone else.

As we progress further and further, we have become increasingly aware that many people that are unable to speak are actually able to communicate quite well once given the means too.. such as an iPad or “voice box” which can modulate text into speech.

We’ve also come to discover that just because an autistic may score low on a conventional IQ test, they may actually still be very smart. In fact, they could be brilliant. It’s just that the IQ test as well as the communication before, during and after was not done in a manner that was understood by the individual.

So labeling a person as “low functioning” because they could not speak or scored low on an IQ test was very much an inaccurate and inappropriate use of the term.

Post DSM-5

The DSM-5 will be wiping out many of the individual disorders within the spectrum and replacing them with levels… 3 levels. These 3 levels will essentially make up exactly what we will come to know as “low functioning” and “high functioning” and then.. one level somewhere in the middle.

They break down like this:

  1. ‘Requiring support’
  2. ‘Requiring substantial support’
  3. ‘Requiring very substantial support’

If you don’t believe me, you can look it up here: http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#

While this will once again open the terminology into very vague misinterpretations, especially for those that have never even heard of, much less read, the DSM… it will also attempt to very much define exactly what “low” and “high” functioning is supposed to mean.

Which means that most people won’t know what these levels mean but if someone does use the terminology incorrectly, you’ll now have something to point them to.

Conclusion

I understand the frustration when you read or hear someone using terms like this incorrectly.. or at all really. But at this point, we’ll all have to get used to it.

It’s coming, one way or another. The only difference being that it’s a little more defined. And now there will be three instead of just two.

So the next time you see someone using these terms, check for their accuracy against the actual DSM-5 records… if you can’t stop people from using them, you might as well try to get them to use them correctly.

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