To Divulge my Autism...Or Not

This is an interesting question to me because it's one of those issues everyone feels different about. Do you tell the general public (co-workers, acquaintances, etc.) that you have an ASD? What if you do. In my case, it seems to create stumbling blocks, especially in college. (In my high school years and before Autism wasn't well-known about yet.) While working on my bachelor's degree, I enrolled in a music class. One day I tried to volunteer but the instructor rejected me because I couldn't handle it. In my German Courses it caused some disrespect from an instructor. The only reason I was able to finish my degree was because of two instructors who were helpful in accommodating me, as well as the director in the disabilities department who worked with me and saw me through to the end. This was the only good that came out of divulging my disability. The worst occurred without me mentioning my condition, all someone had to do was look at my rocking, etc. One day in a university class, I was pulled out of class, brought down the hall and was told my rocking, etc. was distracting and was told to sit to the side of the class. I also had my hands in my pants to keep warm, and they thought I was trying to masterbate.

In the case of employment my ex-boss caused me more anxiety due to being uneducated about my condition. Being employed by a family owned and operated business didn't help either. But I was constantly micro-managed, told I couldn't eat anything sweet because my boss thought it made me sleepy, I was yelled at, he even raised his hand to me once. Even another guy who was disabled quit because he couldn't take my boss' forcing him to be who he wasn't. I think from now on I will just say it won't affect my performance or let them get to know me as me.


 I guess the answer depends on how well you know the person, and how well they know you and how to work with. Some do choose to wait until the other person knows them (like for a friendship to be made, which is probably best because the person will respect you more best) for them and then tells them. Based on my experiences and what I have learned from others, I will only divulge with friends or others I know very well or just say my condition won't affect my outcome.

Mentally Processing a new Autism Diagnosis

Some discussion within our group arose a couple of months back on how parents take it when their child is newly diagnosed with Autism. I remember when I was diagnosed years ago at the age of 17, it was a breakthrough for me as well as a shock because I was not educated on it yet back then. I was initially diagnosed with Pervasive Developmental Disorder (PDD). My parents were told that is was part of the Autism spectrum. And then they told me. At first I likened the word "Autism" to retarded or lower functioning, simply because I knew a girl at my school, who I had been hold by my friend had Autism and I knew she was low functioning. Is that me too? I would find out it isn't later after educating myself a a lot more. Along with this, I was lucky my parents took it better than I did for the most part. 

 Most parents view it as a sudden ruining of the visions the parent had for their child's future from a neuro-normal, running, happy child to a child with a life of sheer uncertainty. They must question and  wonder whether their child with ever walk, talk, be social, etc. They must say goodbye to that vision of a typical life and hello to a new unique path, that with proper education they will come to accept down the road.

 But their are some other ideas I've come across also. I posted the question on Reddit and got several really great responses.

As I think we would all agree with, the initial diagnosis of Autism is only the first step in a long process, and the pathway, which one poster put it, is not linear and headed in one direction as the parent thought, but many different directions. Others reported denial at first, grieving, I have heard they have felt like it was a kick in the gut, questioning what the parents did wrong, etc. due to being uneducated as one poster admitted. One poster mentioned that they had to learn to look at their child as a human being and not one with a diagnosis (YES! Exactly.). Another poster says they were stuck between a rock and a hard place. They believe you have to decide whether to give into your child's demands or hold your ground and let the child be frustrated. Understandable. Other parents get into with with the physicians, telling them to shut up or they have difficulty getting straight talk out of the the doctors. One poster was also talking about dealing with people noticing her child's difficulties in public. This is a good thing to bring up because the public isn't always friendly and a lot of people are still very uneducated in Autism. Another poster said it didn't change anything for them.

So, as we can see it really depends on the parents. For most of them things will usually be more smooth as their child ages, especially for those of us who are very high functioning. We feel that Autism is easier to live with as one gets older. 

All That Vaccine Stuff and The Age of Autism

For quite some time, we have all been hearing (and many of us are tired of hearing about) about whether vaccines do or do not cause Autism due to the Mercury and Thimerosal they contain. Actually Thimerosal is an organomercury compound used as a preservative for vaccines. Organomercury meaning that it contains Mercury along with other elements. It is also an antiseptic and anti-fungal agent. Thimerosal is very toxic in large doses. It can cause many neurological conditions. The doses in vaccines are not enough to cause harm. In fact it has been phased out in this country over the years. It is only used in trace amounts, with the exception of one influenza vaccine. And it has been phased out because it's use with all the crap going on about vaccines, it could be damaging to our vaccine program. It all goes back to Andrew Wakefield, a British Surgeon and medical researcher who fraudulently formed the explosive hypothesis in 1998.  He blamed, namely, the MMR vaccine for causing the Autism and colitis or Crohn's Disease. Upon hearing this (and falling for it), many parents of autistic children submitted compensation claims against it. Many Epidemiological studies have been carried out and many medical organizations have reviewed the case. All that can be found is that the benefits of the vaccine far outweigh the risks. The Institute of Medicine (IOM) has concluded that Vaccines have nothing to do with Autism. And the Centers For Disease Control and Prevention) CDC coincides with them on this one. The MMR, Varicella (Chickenpox), Influenza, Hepatitis A and B, Human Papilloma Virus (HPV), Meningococcal, and Diphtheria, Tetanus, Pertussis have all been reviewed and all have been declared safe. But what about the Pneumonia and Whooping Cough (Bordatella) vaccines? I am sure these are just as safe nonetheless. The scientific study even says the vaccine thing is just theoretical and a hypothesis.

Now what if they did find Vaccines to be associated with Autism in some way. The age window in which they thought put children at risk could have been bypassed and the vaccine given at a later age.  The other questions is whether the Autism could have somehow arisen from the genetic stomach condition and not the vaccine at all?

The one thing I do know is that vaccines do wear off over time. I was vaccinated for measles as a baby or toddler and still contracted them at age 14.

AutismSpeaks Doesn't Speak For Us

     In February of  2005, a new organization was formed. The founder's (Chairman of General Electric and his wife (needless to say I won't be buying GE products anymore)) grandson had just been diagnosed with Autism the year before. Geraldine Dawson, a clinical child psychologist, would join as the chief Science Officer, John Elder Robison as Chairman (more on him later). Later in 2010, Yoko Ono would be named the organization's Global Autism Ambassador. What's next? Justin Bieber? This Organization was called AutismSpeaks. At first many people believed they would be a great organization because they sounded like they truly cared. But after Organizations weren't receiving any needed funds and the organization's growing output of growing questionably acceptable (not acceptable at all in the eyes of most Autists) content, many people are backing away favoring Autism Self-Advocacy Network (ASAN) or the Autism Society of America. 
     Let's take a look at their flaws. 1. AutismSpeaks claims to be a charity. If it were it would gladly see that other individuals and organizations get their needed funds, rather than use it for frivolous expenditures and research, or maybe having a huge pizza party every Friday night. Who Knows? 2. The biggest flaw is in their areas of research and how they view Autism. First of all, they believe there are risk factors for Autism, these being environmental. They view Autism as being a disease with Symptoms which needs a "cure". If I have a disease, then I must have a fever, malaise, etc. also right? We have traits or characteristics, NOT symptoms. And we don't suffer from anything accept depression due to the stigma this kind of stuff has created for us. And many of these traits have proved to be valuable assets to others in our lives, I must add (while banging my head against a filing cabinet like OMG LOL). Even if people are indeed nonverbal, for example, they can be a success. Look at Sue Rubin, a non-verbal Autistic woman who graduated high school with a 3.9 GPA. Granted she has used a machine for writing a communication, but it is her brain that pulls off this amazement. What about the individuals who are born non-verbal, but by the time they are adults, have grown to lead virtually normal lives and are just as verbal as a neuro-normal person? And the word "cured" makes my blood boil when used in conjunction with Autism. We don't need treatments, we need accommodations. Sure we may have accompanying gastrointestinal conditions or seizure disorders which are physically medical, but they are TRAITS and may or may not be related to the Autism itself. This sheer bull only stigmatizes and labels us. Autism Speaks also has merged with Cure Autism Now (CAN), and organization started in the mid-nineties with a focus on research to cure, treat and prevent Autism. It makes me sick just looking at it. And there is also the Combating Autism Act. What??? It would be like a vegetarian being for the Combating Nutrition Act. It makes no sense. It's despicable. Let's pray they don't reauthorize it, or if they have already let's pound it down again. Now, let's take a look at the AutismSpeaks Mission Statement: 

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.

We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families, and society: and we work to bring hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

Urgent global health crisis? There's no urgency or a crisis people. Nothing is going to happen to us or anyone else. Autism is not deadly either. And nowhere in their mission statement does it talk about accepting us as we are, that we have a unique condition with awesome traits or characteristics. We need accommodations and equal acceptance in the world. 

It's actually right here in what their logo stands for:

They say the logo for Autism Speaks, a puzzle piece (pictured on the right), reflects the perspective of a parent or caregiver to whom the autistic person is a problem to be solved or an anomaly to be 'fit in' rather than an autonomous individual deserving of dignity on his or her own terms.

It reflects the hurtful belief that we autists are a problem and that we deserve no dignity on our own terms. Just detestable. 

The word "disorder" is questionable. To me it seems like an okay word to use because Autism is a disorder, but some view it as negative. I think everyone is entitled to their own opinions on that one. 

     The last problem with AutismSpeaks is their spending ways. Per the Boycott AutismSpeaks Website (www.boycottautismspeaks.com), the organization spends less than a third of their budget on program expenses. More than 20 million dollars goes to payroll taxes, benefits and salaries. And more than 15 million dollars goes to science grants and awards. What does that tell you? A mere just over 2 million dollars went to family services. And the fact that AutismSpeaks has garnered many companies under their belt to support them, only says they are dehumanizing the Autism community for financial gain. 
     Even John Elder Robison, a former senior leader with AutismSpeaks, who put a lot of effort into trying to steer AutismSpeaks in the right direction resigned his rolls with the organization in late 2013 for the aforementioned reasons. He only stayed with them because he thought their powerful fundraising methods could be directed to research and services that could be truly beneficial to those with Autism today. Unfortunately, this hasn't happened. And he says in his blog that he cannot continue with an organization that repeatedly makes mistakes and cannot connect (correctly) with the audience that it wants to represent. He along with many other leaders have resigned or been fired in order to keep the idea going that vaccines cause Autism (blog on this exhaustive subject to come later). 
     So, as you can see AutismSpeaks only speaks for themselves to exploit Autists for money. So stay away from anything affiliated with them and go to boycottautismspeaks.com and sign the petition to have this Organization defunct, as I have. 

Autism and Happiness

Most of the autistic people I talk to are happy with themselves as they are. However, I occasionally meet someone who sincerely wishes they were not autistic. I find this disappointing, as there are many unique traits that we have.

It's easy to see why a few autistic people are unhappy with themselves. We're all told from an early age everything that's wrong with us. This can wear a person down. I'd like to attempt to counter that negative message. Everything I say here will come back to one main point: You are not broken. You are a unique individual, with much to contribute to the world around you.

Let me start off with how autism is usually defined. As we know, the traits are usually described in an inherently negative way. For example:

• A fascination for details.
• A tendency to focus on oneself.
• Inflexible behaviors.
• Rigid attitudes.

Looks familiar. I don't think anyone will dispute the accuracy of that list. But, as a friend of mine said once, that list could just as easily be written as follows:

• A superior mind for details.
• Good ability to tune out social distractions.
• Excellent structure for organization.
• Resilience against peer/authority pressure.

While it refers to the exact same set of traits, it has a much more positive feel to it. The comparison, I think, speaks for itself. I believe this is the key to being happy about being autistic.

One of the things I think is great about autism is that every autistic person is an expert in something. It's very hard to maintain a high interest in a specific subject without gaining an encyclopedic knowledge of it. In addition, our interests tend to be unusual enough that most people don't learn anywhere near as much about them. Depending on the interest, it's often easy to find a way to put that kind of knowledge to use.

I know what you may be thinking. Your interests are weird or childish, and you get to wrapped up in them. I've been told that too. Frankly, I happen to like my weird and childish interests. It makes no sense to me to stay away from them just because they may not be popular. I also see no reason to pursue interests that I have no liking for, just because they're considered normal.

The intense focus can be a problem sometimes. However, as long as we can learn to keep our interests from interfering with life, I see no difference between that and the intense focus many neuronormal people place on, for example, football.

Perhaps the more obvious deficits related to autism are related to social interaction. These are also usually the first to come up when autistic people want to become normal. Learning how to socialize is important, but it can also be very difficult. The mistake that some people have made is that they try to force themselves to socialize in an uncomfortable situation. This will never work.

Most of the autistic people I've talked to that had success in learning to socialize have done so on their own terms. It's easiest to do so in a setting that you enjoy, and around people you're comfortable with. Never force it. Just try to let it come naturally, and accept that you will make mistakes. I assure you that it does become second nature with time.

I've also heard people talk about the comorbids of autism, such as depression, anxiety, mental illness, and gastrointestinal problems. Some people have speculated that if their autism were to be removed, the comorbids would go away too. It's unknown how closely any of these can be connected with autism, though depression and anxiety can logically be connected to life experiences. Simply put, there is no way to know if curing autism would also cure its comorbids.

What I can say is that virtually all of the comorbids associated with autism can be treated by other means. Anxiety, depression, and mental illness can be treated with therapy and medication. GI problems can usually be resolved with dietary considerations. While I am strongly against a cure for autism, I tend to favor these treatments for other issues.

It can be very difficult to find happiness by striving for an impossible goal. On the other hand, it can be very gratifying to accept yourself as you are. It's possible to live a happy life with autism. What do you like about being autistic?

Don't Blame the Asperger's

I'm sure you've heard by now about the tragic killings last weekend. It's been all over the news and has been making the rounds around the internet. It's hard to avoid hearing about it. I will not be using the killer's name or picture, because I don't believe that mass murderers should be given that type of attention.

So, why am I writing about a killer if I don't think killers should get attention? It's because of the reports that he may have been an aspie. According to some of what I've heard, there may be something to this one. He seems remarkably similar to someone in the online aspie community. I'm not sure that I've ever run across him myself, but some of my friends have. They found him to be creepy long before this.

There is still the question as to whether this man actually was an aspie. It has been reported that he has never been diagnosed with any form of autism. However, several aspects of the autistic community do recognize a self-diagnosis as being valid, if the person in question genuinely feels they have reason to believe it. Because of this, I am prepared to accept it.

Let me sidetrack myself to talk about the news media's role in these stories. After the Newtown massacre, Joe Scarborough had mentioned the killer may have been an aspie. This caused a huge backlash from the autism community. As a result, the media retracted the statement about Asperger's and agreed that they would not mention Asperger's or autism in a story, unless it was relevant.

The real problem with a retraction is that it doesn't undo the damage from the initial report. In addition, I would never ask for a retraction to a verifiable detail. The biggest issue with that style of reporting is that it did nothing to state the relevance of Asperger's to the story. That leave the audience to draw the connection themselves.

In the recent killing, the media seems to have forgotten their rules about talking about Asperger's. Most of the major news outlets seem to have mentioned it. To their credit, CNN and NBC did note that there is no connection between Asperger's and violence (CBS did not). Unfortunately, Joe Scarborough, an MSNBC commentator, is still apparently trying to scare people.

The real truth of the matter is that it doesn't matter whether the killer was an aspie or not. As I said, there is no evidence linking Asperger's to violence. In fact, studies have shown no significant difference in the amount of crime committed by aspies than by the general population, with a somewhat lower proportion of violent crime. Besides, think about how many aspies there are. If we were all ticking time bombs, we should be hearing about another mass shooting almost every day.

The other thing I would like to talk about briefly is mental health. Again, reports say that this man has seen several therapists, apparently indicating mental health issues. And again, there is no evidence to support a connection between violence and mental illness. In fact, mentally ill people are far more likely to be the victims of violent crime.

All I can really say on this topic is to beg people, please do not talk about mental health policy in the context of mass killings. What tends to happen is we get policy that treats mentally ill people as potential killers, rather than treating them as people that need extra support in order to function, and in some cases, to prevent them from harming themselves or others.

In conclusion, normal people do not go on killing sprees like this. Neither do aspies, autistic people, or the mentally ill. All I can say is that this man had an over-inflated sense of entitlement that, unsurprisingly, wasn't being met.