Monday, September 17, 2012

Warrior Parents

Autism parents take a lot of flack; “they just need more discipline” “maybe you shouldn’t take them out if they can’t behave” “they’re just spoiled” But autism parents who are ‘treating’ their children get that and more. “Don’t you know it’s genetic” “Why don’t you spend more time with your child” “You’re just looking for something to blame” “Autism is lifelong and cannot be cured” “I can’t believe you’re trying to change who your son is” “Early intervention is the only treatment for autism” I’ve never seen so much discrimination against a ‘disability’, in all my years.  Do families of cancer patients, Alzheimer's, MS, Diabetes etc. deal with the same?

There’s so much misconception around autism, that there are many who have no idea what it actually is. Autism is the ignored epidemic. The first cases of autism were noticed in 1943 and because it was essentially a rare condition, it was paid only a slim amount of attention. Around the 1980’s people started noticing more children exhibiting behaviours attributed to autism and some parents even went great lengths to try and figure out just how many children were affected in their community. The 1990’s rolled in and not only were parents becoming more vocal about the increasing number of children affected by autism but organizations were started to notice increases as well. With such little known about autism besides the requirements for diagnosis and with such little awareness about the diagnosis itself, it took sometimes years for a child to be officially diagnosed after the first signs and still does to this day. In the early 2000’s a movement started gaining momentum; parents of children with autism starting solving the puzzle themselves.

Not only were parents starting to figure out exactly what autism was, they were becoming even more vocal than before and with these parents able to use such means as the internet; they were starting to be heard by more people than ever before. Things are quite different now than they were in the 1940’s, not only are we living closer together and in higher numbers but also the internet helped give way to something that wasn’t available to parents before; easy mass communication. Parents are now able to compare notes faster and in greater groups, they have not only brought about more awareness to autism, but have also paved the way for the swarm of new autism parents that are to follow. These parents have revolutionized the defining factors of autism and mainstream is years behind the discoveries made by these people.

We’ve gotten here today, because of how ignored autism was. It all begins when a child is diagnosed with autism and the parents are told something to the effect of; we don’t know the cause, it is lifelong with no cure, they will most likely never talk, you’re best to just give them an enjoyable life, because their intelligence level will stay the same and nothing you can do will help. This is where the divide begins, some parents accept what the doctor has told them and some parents refuse to accept that there would be no help, no solution or no investigation into this whole autism thing. Parents were the first starters of early intervention. Their efforts in trying to teach their children, to not leave them left behind, to refuse to let their children be unable to have the same opportunities as other children.

As early intervention picked up speed amongst the parents -all the while mainstream had yet to acknowledge it- increasing numbers of children brought about more parents forming groups to exchange information. They only had each other as in many cases, friends and family suddenly found themselves too busy to visit, these parents support system had become null and they sought out each other for comfort. During this time as the numbers increased there were more and more parents talking about regression; a healthy born baby, progressing normally or above and then losing all or most of the skill previously achieved. Was this new, were parents paying more attention or were they starting to be heard and pass information for the first time ever. I’ll put my money on all three. Out of this spawned another group of parents, parents who were noting physical symptoms in addition to learning/skill/social regression. The take action movement that early intervention parents had started evolved into a movement that is putting the pieces together in this puzzle that is autism.

Not only do we know more about the similarities and differences between those with autism to the point that we could better group and diagnose, but we also know what is really causing autism and how to treat those affected. You’d think that these parent would be commended for the years of effort they have put in and for the discoveries made, but alas not only are they being ‘blacked out’ from mainstream, they are also meeting anger from those who feel that by ‘removing the autism’ you are also taking away who that child actually is. Autism has now become both controversial and political because of the gaining vocalism from parents who are just trying to help their children and make their lives better. Now if someone had discovered not only the cause of, say down syndrome, but also ways to treat it, would they too be met with; ‘it’s genetic there is no cure, you are talking quackery’ or ‘you’re trying to change who they are’

While mainstream is just grasping that early intervention is possible, this growing group of people are doing what no one else has; they are helping parents and children. What started out as institutionalize is the only option due to refrigerator mothers, to there is hope, support and children starting to recover.  Their personalities do not disappear, they lose the restrictions that autism brought and their bodies become healthy again. Doesn’t hope, support and recovery sound better than genetic, no cure and you’re on your own?
Autism is become larger because more and more children are being affected; an estimated 1 in 29 toddlers will be diagnosed with autism. Nearly everyone knows a child with autism and diagnosing has just this last 2yrs, gotten the push to pay closer attention. While the messages get muddied by the media and other self interest groups, more and more parents are finding these parents and using their knowledge to help their own children. Perhaps years down the road, mainstream will have no choice but to catch up as they had to with early intervention and maybe then we can put a halt to the ever increasing children being diagnosed with autism. If today it is 1 in 29, what will it be in 5, 10 or 15 yrs from now?

They even have a name that’s catching, warrior mothers, warrior fathers, warrior parents. They don’t always call themselves it but by golly they surely deserve it! They spend hours helping their children, discovering who they are, what their qualities are, what obstacles they face and see them as any other loving parent would see their child, but with determination. When they actually have time for themselves -whatever little that may be- they usually use most of it to study, research and plan for autism. They also take every moment possible to be vocal, spread awareness and advocate for their own and others affected by autism. They are some of the strongest, determined and hardest working people I’ve ever come across and instead of the praise they should receive, they are met with anger, abuse and mistrust. Yet still, they press forward and while they are still hurt deep down by what others say to them, they never let it deter them from fighting for the truth, for these children and for action.

These parents are truly the warriors of today and without them, my son would still be sitting in the corner rocking, spinning the wheels of a care for hours, while ‘zoning out’ and be unable to look at me, unable to be close to me, instead of the wonderful, expressive, imaginative little boy that he is today.

I chose this post to thank not only all the warriors before me but also the ones currently fighting today. You are making it possible for children and adults with autism to receive the services, support and possibility for a better, pain free, obstacle free life that they have today.

Thank you for your courageousness, your efforts, the sweat and tears, heartache and sorrows that you endure in order to change the face of what autism is. Know that parents everywhere are truly grateful for your voice and knowing that others stand beside them while they fight for the same cause. 

Monday, August 27, 2012

My name is Jason Ross. I am 33 years old Autistic Adult and an Autistic Rights Activist. I am pursuing my goal to help other Autistic people from all ages to be able to gain the support, strength, and empowerment any one else would need to live their life. Every one is different and unique.  No body can take dignity away from any one. We are all here for a reason. Some of those reasons are to be able to help each other along the way. I was featured in a few different media and publications already.
I do artwork and meditation for relaxation as a hobby. I want to be able to do more artwork and do it better each time. Meditation helps me relax and clear away the influences from the day. I love to help people in what ever way I can.  I use my hobby in artwork and writing to help express myself to help others, but I want to do this more in person. I am highly motivated to help.  I am hoping to help mentor an Autistic Adult in the future who I met recently.  I blog at Drive Mom Crazy, since 2007 and host the Autistic Artistic Carnival on my blog every year on June 18, Autistic Pride Day.  I will be simultaneously writing blogs on this website as well.

By the way, I love all animals and will be posting pictures of the family dog Chloe on here too!

I am happy to be a part of this blog, Katie!! Thank you for the opportunity, J :)

Saturday, August 25, 2012

My Son is Recovering

Yes you heard me right, recovering.  

There is no quick fix for anything, it takes hard work, dedication and patience. Oh how amazing it would be to find that magic something I could give to him, so all his ‘body problems’ wouldn’t be problems anymore and he could live exactly as he wanted, without those restrictions he has. It’s not like that though, there is no one pill to help him, no vaccine to cure his ailments and no one medicine or procedure to ease his struggles.

Oh how some must be shouting ‘she wants to cure autism’ ‘you can’t cure autism, it’s forever’ ‘she’s trying to change her son, his personalitity’ ‘she’s taking away who he is’ But it doesn’t matter, because I am not doing any of those things. When it comes to anything and in particular, most all things autism; a lot of people make assumptions. They’ll read a headline or a single comment and make a conclusion –usually negative- about those with autism or the parents that are raising them; without knowing the whole story.

Cure is not the same as recovery, just as therapy is not the same as treatment. So when people make the assumption that parents who are recovering their children, are trying to cure them –usually by ‘snake oil’ means- they just make themselves seem foolish, especially if they start yelling about things they do not fully understand. Which brings us to another comment often made, about’ taking away our child’s personality’ (if it didn’t tick me off so much, I’d probably laugh myself to death). It has to be in the top ten of the most ridiculous thing pertaining to autism that I’ve ever heard –and I’ve heard a lot of ridiculous stuff people think about; autism, those with autism and parents of children with autism- .

Let’s cut to the chase. Current autism diagnosis is based solely on behaviours, so obviously those with autism do things that are recognizable; like stimming, what most think of as odd behaviour, sensory issues, repetitiveness, sometimes OCD etc. If those go away, our children are still there and their personality is not gone. Who in their right mind would truly believe; that autism IS your child, that without autism, your child is without their personality, that the things causing boundries for your child; make them who they are and when they are gone, so essentially are they.

Really think about it for a second. Put simply; Bye bye autism – bye bye child – hello empty shell. Now doesn’t that sound ridiculous?

From personal experience alone, my son has been able to show more of his personality since we have been doing treatments. He isn’t as bound by his autism and can more freely explore and express who he is. I would never think that by helping him, I am taking away who he is. It just doesn’t work like that. I could assume that those who think opposite are selfish and enjoy their child’s ‘quirks’ so much that they want them to stay-but then I would be just like them and make assumptions without know the whole story.

So back to recovery; it’s freaking hard work, my friends. I’m never off the clock, there are no breaks and the stress is immense, but the gains that you see…… make it all worth it. My son has to work just as hard as I, if not harder because he is the one experiencing autism.  I have to try hard to find ways to help him re-learn to speak and bypass ‘faulty synapses’, but he has to try even harder to actually do those things. He is my little trooper though and he tries so hard to break through this ‘veil’ that is upon him.

See recovery has two sections; Treatment and Therapy. Therapy is there to help him learn, overcome and cope. Treatment is there to repair damage that has been done to his body. Pretty hard to grasp if you think that autism is a psychological condition, it’s even harder when under the impression that autism is solely genetic and untreatable. Yes the brain is affected, but so are many other parts of the body and our body is a living, healing machine.

When you break your arm, your body repairs that break; with a little help from us of course. To think it just ends there is absurd. Our bodies can do things that we have yet to fully understand, one thing we do know is that we are capable of overcoming great damages done to ourselves. I’m not saying those with autism are damaged people, but that their bodies have taken damage. It’s easily seen in brain scans of those with autism; there are specific areas that show damage. Since everyone is different and everyone with autism is affected differently; we see a scatter of other areas in the body that are damaged as well.

Some may argue that this isn’t a part of autism but I protest; if the damage to other areas of the body, causes the damage to the brain, that results in autism or if the damage to other areas causes the autism behaviour, than doesn’t that mean it is part of autism……. a big part of autism in fact

Autism isn’t a psychological based condition, it is a biological one.

Treating those biological issues have given my son his voice back; he can ask for things, sing songs and make his action figures have super fast conversations. It has allowed him to use his imagination and be able to explore things instead of ‘getting stuck’ on one tiny part of something. My son went from rocking in the corner, flapping his hands and seemingly ‘out of this world’ to a boy who gets to interact with other children, play games, draw, explore and live life. He went from hating being touched, to requesting hugs, kisses and wanting to snuggle up close. He doesn’t spin wheels for hours on end any more and he looks me in the eye.

He looks me in the eye.

Thursday, August 23, 2012

Guest Post By Tara

 We have a new guest blogger today. Tara Marshall is an autistic adult.
"I keep hearing a lot of people say that vaccines can't be related to Autism.
Oh, really? I'm an Autistic who has a lot of Autoimmune issues. My mother had Guillain Barre Syndrome from a flu shot while she was pregnant with me, and we'd both be dead if they hadn't got her a ventilator fast enough. One of her sisters got polio from the Salk vaccine, the other sister was Autistic too. Aunt Alison has lived in institutions and group homes since she was sick.

And my nephew was an interactive, babbling, perfectly normal little boy who spoke about 10 words when he went in for an appointment at 15 months of age where they gave him the DTaP and the MMR. The NEXT DAY he just sat there drooling, and making really nasty messes in his diapers. It was horrible. No cries to tell us his diaper needed changing, no more asking for mommy, or food, or ANYTHING.

And then he was diagnosed with Autism a month later. Besides being Autistic myself, I work with children with Autism, and I've heard similar stories to my nephew's in DOZENS of children. Seizures, high fevers, loss of language, loss of interaction... and all within a week of vaccination.

The older Autistic people I know are mostly less severely affected. If we underwent a regression, it usually tracked with an infection and happened later in our lives. Vaccines can be a problem."

Breaking News From Age of Autism: The Immunization Partnership Applauds Meachum's Ruling, Exposing Her Conflict of Interest

Author's Note: Thank you, Katie Kagan for inviting me to this terrific blog. My name is Jake Crosby; I am a public health graduate student studying epidemiology at GW, a contributing editor to Age of Autism and am diagnosed with Asperger Syndrome. I write a regular column for the site accessible here:

Followers of my writing know that my stance on autism is that it has exploded to epidemic proportions thanks to our government's vaccine program. I am a proud supporter of Dr. Andrew Wakefield - the scientist who first seriously raised the possibility in the Lancet more than a decade ago. Earlier this month, Dr. Wakefield's defamation case against the pharma-backed British Medical Journal and its hired gun Brian Deer was thrown out of district court by a terribly conflicted judge, Amy Clark Meachum. The story below ran on Age of Autism today and is about how Judge Meachum is more conflicted than I had ever previously imagined.

The Immunization Partnership Applauds Meachum's Ruling, Exposing Her Conflict of Interest
By Jake Crosby
Confirming her conflict of interest, Judge Amy Clark Meachum's decision to throw Dr. Andrew Wakefield's defamation case out of district court was publicly applauded by the President/CEO of The Immunization Partnership who promised to continue working with theTexas Academy of Family Physicians (TAFP), for which Judge Meachum's husband lobbies.
On August 9th in the comments section of “Science”Blogs, The Immunization Partnership President/CEO Anna C Dragsbaek wrote:
Thanks for your very humorous blog. I am the President and CEO of The Immunization Partnership, the organization that hosts The Texas Immunization Summit every two years. We applaud the judge’s decision in this case and continue to work with TAFP, and countless other organization around the state to ensure that Texas is protected against vaccine preventable diseases. As you might imagine, we are at ‘ground zero’ in the anti-vaccine debate. We fight everyday to counteract the egregious flow of misinformation and erroneous assertions that are propagated by Andrew Wakefield and his colleagues. As for the conspiracy theory, if working in collaboration with all of the stakeholders locally and nationally to ensure that families do not suffer the consequences of vaccine-preventable diseases is conspiracy, then color us guilty. In the meantime, we will continue to advocate for evidence-based immunization laws and policies, educate the public and support immunization best practices. We welcome your participation in our upcoming Texas Immunization Summit, September 27th and 28th. Come see how Texans are stepping up to the plate on this critical issue.
However, the keynote address at this upcoming TAFP-sponsored summit will not be given by a Texan, but by the vaccine industry's media go-to guy Seth Mnookin, who has made libeling Dr. Wakefield a considerable part of his career. At the 2011 World Science Festival in New York City, I was standing right next to Mnookin when I heard him tell another attendee that Dr. Wakefield “faked his data.” At a conference put on by a Merck-chaired organization, Seth Mnookin booted me out when I defended Dr. Wakefield in Q and A. Similarly, when the judge's decision was announced, Mnookin tweeted:
Wakefield harassment suit against BMJ & journalist thrown out of court.… h/t @ejwillingham
In 2008, the Texas Immunization Summit hosted a keynote speech by millionaire vaccine industrialist Paul Offit and in 2010, hosted a talk – sponsored by TAFP – given by anti-vaccine-autism research group Autism Science Foundation's president/founder Alison Singer. She tells parents to vaccinate recklessly even though she split the MMR vaccine into three separate shots for her neurotypical second daughter.
The week Dr. Wakefield's lawsuit was filed, the Houston Chronicle quoted The Immunization Partnership's co-chair to its advisory council Dr. Julie Boom, as saying:
"Yes, there are many who have 'hurt feelings' regarding the aftermath of his faulty research," in response to “Injury to feelings” being listed in Dr. Wakefield’s lawsuit as one of the damages sustained as a result of the British Medical Journal's libel.
Last June, Dr. Boom sat on a panel with Alison Singer hosted by The Immunization Partnership titled“Vaccine Safety Concerns and How to Respond to Vaccine-Hesitant Parents.”
In a slide presentation for that event, Dr. Boom even embellished the accusations against Dr. Wakefield by stating that in “2011 -BMJ investigation labels Wakefield's study 'an elaborate fraud' and Wakefield's medical license is revoked.” In reality, the revocation of Dr. Wakefield's medical license had nothing to do with Deer's fraud charges; it was based on charges of serious professional misconduct in the Lancet paper that would later be officially disproved on appeal by Dr. Wakefield's colleague, Professor John Walker-Smith.
The Immunization Partnership obviously does not care; they need Brian Deer and the British Medical Journal’s defamation of Dr. Wakefield to support the vaccine-autism cover-up. It does not matter that the accusations against him are completely made-up; the whole reason they were made-up in the first place was to keep his voice out of the vaccine-autism controversy and continue to cover up the fact that vaccines do cause autism. Any judge deciding the merits of Dr. Wakefield’s lawsuit should not be tied to The Immunization Partnership, which its own President/CEO admits has a huge stake in the suit’s outcome. Yet the judge in this case, Amy Clark Meachum, is still married to Kurt Meachum who lobbies for the Texas Academy of Family Physicians, which continues to work with The Immunization Partnership.
Adding further insult to injury, Judge Meachum’s husband is also a lobbyist for the Texas Chapter of the American College of Physicians, which promoted and linked to the BMJ's defamation against Dr. Wakefield in its online publication ACP Internist. All things considered, Amy Clark Meachum should recuse herself from any future decision-making related to Dr. Wakefield's lawsuit. That she failed to do so discredited her ruling to toss out his case and was a breach of ethical judgment.
Jake Crosby has Asperger Syndrome and is a contributing editor to Age of Autism. He is a 2011 graduate of Brandeis University with a BA in both History and Health: Science, Society and Policy. He currently attends The George Washington University School of Public Health and Health Services where he is studying for an MPH in epidemiology.

Wednesday, August 22, 2012

Hi Everyone!

Thank you Katie for inviting me to your blog.  I divide my time in the autism community doing the following...

1.  Teaching future educators, social workers, school psychologists on how to best educate those with autism as well as conducting research in autism as my job as professor of special education at Adelphi University.
2.  Consulting, conducting workshops, and speaking about autism around the world.  Interestingly I've found that autistic people are the same everywhere.  Also, I've learned that where ever I go, no matter the location's economic status, there's always something to learn from what people in other lands are doing to support individuals on the autism spectrum.
3.  Writing books, articles, etc. about autism.
4.  During the rare times I am home I give music lessons to people on the autism spectrum.

One thing that has been on my mind of late is that we need to get off the deficit model of diagnosis and intervention in autism and move towards a more characteristics based approach of how we think about ASD(ifference).  Doing so will encourage us to realize the considerable strengths people on the spectrum have to contribute to society and make it a better place for all.  Combined with greater appreciation of what autism is, our knowledge of different ways of communication and other educational techniques, people on the autism spectrum leading fulfilling and productive lives can become the rule, rather then the exception.

Let's get to work and make it happen!

Stephen Shore

Saturday, August 18, 2012

Needing Health Insurance and Having a Mild Disability

This essay was basically written in response to a promise to the National Coordinator of Healthcare-Now that I would use my disability to help put a human face on the healthcare crisis. Please do not mistake disability with inability. You don’t have to look far to find a human face on the healthcare crisis. Besides healthcare crisis I find it to help put a human face on a host of other disabilities. It is not just disabilities (physical, mental, or emotional) that limit people from competing for jobs that have medical insurance; some times people make mistakes in education or life circumstance that lead some people to the break the law and later on are sorry.   

For the clearly disabled, such as those who are crippled, blind, have mental retardation, cerebral palsy, other forms of paralysis, severely autistic or have a disabling mental illness, etc; we all know it would be extremely difficult for them to get a job that has medical insurance; or go buy medical insurance with their earning. But are likely eligible for MEDICAID or Medicare! BUT! What about the mildly disabled, the one that should be able to work, obtain their insurance from their job, or go out and buy medical insurance?  If they can’t get a job, they can’t have medical insurance (under our so called “world’s best healthcare.”). By the way, USA healthcare is #37; not #1.  For someone with a mild disability such as Aspergers Syndrome, a form of autism, competing in the narrowed job market can be a nightmare. I have such a disability; plus I am in my 50’s. 

Those individuals may even have a record of holding down a job with benefits; BUT, what happened if he/she loses that job?  I am in that boat. He should get another job; right?  After all, there are plenty of jobs to go around that bear the medical insurance benefits; right?  Many jobs are deliberately reducing hours so they can get out of having the medical insurance benefit; it’s not just because they don’t want to; they can’t afford it. 

Some might say if you have problems standing on your feet or keeping your balance or walking, get a cane. Wouldn’t it be nice if you have autism you could get yourself an autistic cane.  It might help you to make better eye contact. It might help you to get words out better, if you get stuck in the middle of a sentence. Maybe this cane will help with process of connecting your internal thinking with the reality outside.  Maybe it will help you with all the limitations inflicted by the autism.  Maybe this cane will calm your out of control nervousness.  Autism Speaks; we had jolly well better be listening. Please visit  Autism Speaks is actively seeking legislation for the fair distribution of healthcare. My own opinion is, we should go to a single-payer national medical insurance system, like HR 676.  It will come clear to you as you read on; if some kind of impairment knocks him out of the ability to get a job (insurance bearing) it may also cost him his privilege of having medical insurance.

I’m writing this essay because I have a condition called Aspergers Syndrome, which is a form of autism.  It doesn’t mean I can’t work. I have worked very well at a 9 year career at Lester Electrical, till they downsized again.  I have since tried to find another job (living wage and medical insurance benefits); of course I am also trying to compete for available jobs with my non-autistic counterparts.

Though I’ve had testing done at age 7 I have never heard the term Aspergers Syndrome until I was 53. In spring of 1985 I’ve asked a co-worker about my being different; she said “you are different in a very wonderful way. You are immature in concept of reality, which is not necessarily a bad thing.” In the summer of the same year after a relationship failed, the same co-worker mentioned autism as a possibility; I didn’t believe the co-worker. The former girlfriend also knew there was something different about me, but didn’t know what it was. She has also warned me that it would affect future relationships if not solved and informed me that she would do everything in her power to get solved if she had been afflicted by it. By the way, we have continued to be friends, even after breaking up the romantic affair.

I still didn’t know the word Aspergers; but knew I was different; but didn’t always know what the heck it was. In December of 1985 I saw a psychiatrist to try to find out what it was. They didn’t get very far because the insurance company refused to pay for it; and the clinic didn’t take IOU’s. FINANCIAL BARRIERS = HEALTHCARE CRISIS.  This is another example of our need for a fair distribution system of healthcare.  The doctor prescribed expensive psychological testing; but I couldn’t get it done due to the financial barrier.  While I am no longer the biggest believer in psychiatry Dr Gutierrez may have been able to find out what it was and what I could have done about it; maybe things could have been done without regards to whether the insurance company will pay for it or I can pay for it.  Not being able to fund the screenings I have coped best I knew how.

As mentioned earlier I have had a 9 year successful career at Lester Electrical here in Lincoln NE; now it is over. Where do I go next? Apparently, needing help to compete in the job market I went to Voc Rehab or “Vocational Rehabilitation.” Now, Voc Rehab is paying for expensive tests that the psychiatrist previously wanted to run.  Hopefully Voc Rehab can help place me onto a job that pays a living wage and medical insurance benefit. If they continue to be unable to get me place in a job they may have to declare me disabled; that is not what I have in mind; I don’t think that is what you want either. Do you want me living off your taxes? 

If I am the only one that would benefit from a single-payer medical insurance system, and everybody else is better off with the privatized care; by all means, let’s stick with privatized and leave the insurance companies, the mafia, the murderers in control of our healthcare. 

If I could have found out long time ago; and found out what to do about it; not prevented by the financial barriers; I may have already gotten the counseling, training, and other kinds of treatment to handle my Aspergers syndrome. I may have also been making good money; which means I would be sharing generously in our national universal healthcare system (President Truman succeeded in getting a universal healthcare system implemented).

Because of circumstances that forced me to come to terms with items making me different and finally finding out my condition is Aspergers Syndrome, as a folk musician/singer/songwriter and that mostly for a cause, mainly concerns over healthcare crisis am branching out my music ministry to including Autism Awareness.  I have written a song for Autism Awareness.  I am autistic; and I am not ashamed of it anymore. I’ll wave it as a banner if it helps children diagnosed with autism get needed therapy without financial barriers. Hardships connected with my Aspergers (including being a social outcast in high school and other growing up hardships) is where I got the incredible compassion to form my music ministry for affordable healthcare; now branching to include Autism Awareness.   

In conclusion; many may believe that those who can should work and obtain private insurance.  And, of course, we have the welfare, Medicare, and Medicaid for those who obviously can’t work. The question still comes up, “Are there enough jobs so that everybody that can work and obtain medical benefits can find (or compete for available) jobs with medical benefit and living wage?”  Can everybody that can and is willing to work; or everybody that can’t but would work have affordable access to healthcare? Many like me, who are on the edge and should be able to work, but find it incredibly difficult to compete for living wage/benefit bearing jobs with non-autistic counterparts. One person can take for granted a job with excellent benefits package; someone is obviously disabled (blind, crippled, hearing impaired, cerebral palsy, severely autistic, mentally retarded, maimed, etc) eligible for Medicare or Medicaid . We must make sure that the people stuck in the middle can also HAVE AFFORDABLE ACCESS TO HEALTHCARE.  Furthermore; the right reforms to healthcare will bring jobs back to America which are currently being outsourced oversea.

On January 2, 2008 I took a brave step. I was at the Meadowlark Coffee & Espresso in Lincoln NE; at the piano on open mic night.  Tonight I will do a song of the late Sammy Davis Jr(initiated chord run in Ab) For all my life I knew I was different; but I didn’t always know what the heck it was. For years I’ve coped and handled it well. Recent circumstances forced me to come to terms with it.  I have Aspergers Syndrome, a mild form of autism. Yes, I am an aspie, an autie, and not ashamed of it anymore. This is where I’ve got my incredible compassion to become “The Healthcare for ALL Music Guru.”  But ultimately (started introduction in C) I’ve Got To Be Me, my strengths, weaknesses, and things I wish could be different, I’ve Got To Be Me. Then I started singing the song “I’ve Got To Be Me” by the late Sammy Davis Jr. 

Living with Asperger's and Not Always Knowing It

I thank Katie Kagan for inviting me. I have Asperger's Syndrome which is a high functioning form of autism. I grew up with this condition, not knowing what it was. I have even held jobs, not knowing what you job is. I have graduated high school, class of 1973, Stevens High School, Claremont NH. I got a job which I have worked at for 5 years at a woven label manufacturer. Afterwards I have pursued training in Electronics Technology. I have since held jobs as a TV technician, a 2-way LMR Radio technician; the peak of my career was an Industrial Test Technician at a battery charger manufacturer. All this time I still didn't know what my condition is. There was co-worker at one of my 2-way shop jobs back in 1985 thought I was autistic; I didn't believe her.
The battery charger manufacture downsized, I have survived several downsizings. Then it downsized once too often. I took a job at Sears Holding / A & E Factory Services as an in home service technician. A problem I had there was my limited ability to deal with customers. I knew I had that problem; but thought God got me the job and was gonna let me succeed. I was terminated 8-23-2007, not over misconduct, but found not able to do the required duties.
Facing a tough job market I have figured I would need some help from Voc Rehab. My mom remembered that I was diagnosed with "Asperger's Syndrome." This also meant that I needed to become an expert on this  subject quickly. Nebraska Voc Rehab hired a psychologist who has re-diagnosed me with Asperger's Syndrome, an anxiety disorder and some depression. By the way, Dr Caryll Palmer Wilson also has AS.
I have taken some, what I can get jobs; a mama and papa micro-manufacturer of cable harnesses.
Oct 31, 2011 I have taken a job at Tenneco Automotive, where I am working at now, finally restored to having a halfway decent livable wage and medical insurance benefits.
Here is my most recent autism awareness song, my 5th autism awareness song, also a goal for April 2012, Autism Awareness month, I Have a Handicap.
I have a video where I explained about living with Asperger's Syndrome, with a singing of I've Gotta Be Me, a Sammy Davis Jr classic. I apologize I had some problem loading up video; need to re-load or re-record when I can find way to make it not do it. Ultimately, I've Gotta Be Me; somewhat different.

Tuesday, August 14, 2012

A Little About Me and My Life

My name is Susan.. I am 40 yrs. old.  Married to a Retired Coast Guardsman.  I am a Stay at Home Mom/ Homeschooling Mom to my 6.5 yr. old speech delayed son.  We are Raw/Vegan/Fruitarian (Grain, Soy, and Gluten Free).  What a HUGE difference it makes living this healthier lifestyle..!!!!!!!!

Years ago I was very unhealthy. I have relatives and friends who are suffering with Cancer.  I am healthier than I have ever been in my life.  I attribute that to all  I have done since I have discovered alternative health methods. Yay!!!!

Katie asked me to be a contributor to this Blog site..

So here is some background into my insight on Autism.

As a baby; my son was characterized by docs as being an Autistic.  He had a lot of ailments that are clumped together to give the impression he was Autistic or on the Spectrum.  I don't like to refer to my son as an Autistic..Not that there is anything "wrong" with being and Autistic or anyone of the like....

Our story is much too long to type here..

My informational website basically tells the whole story....

We are doing a lot of alternative health methods to treat some of his biological ailments related to his big speech delay.  I am proud to report that it is working like a charm.  He is doing so great with it all.. We are currently detoxing some Mercury.  He was getting slower or almost at a standstill as far as his progress with his speech.. We went to the doctor yesterday and he was muscle tested for weakness in the body and he came back as needing to detox Mercury.  How about that..??!!! Sounds fitting...  I believe he will make huge progress with his speech once we finish this homeopathic mercury detox.

We are also currently doing an all around allergy treatment called LZR-7.  Getting great results from that.. I truly recommend others give it a try.

Here is a video that explains what it is about and what happens...

I look forward to contributing and learning more from this site...

Come by my informational website and see if there is anything you might be open to learning or applying to your own life.

Hugs to all


Monday, August 13, 2012

There is Always Hope

                Today I am an Autism Mom, but 6 years ago the only thing I knew about autism was a news report stating the numbers were now 1 in 250; that is all. After my son I learned (and am still learning) so much about autism, so much in fact that I’ve become an advocate for those with autism and an activist fighting for better studies, better care and a better understanding of those diagnosed with autism. My son and I are a team, we work together in this journey and boy does he work.

When he was born his father chose the name Atticus, after Atticus Finch a character in the book To kill a mocking bird. He chose this name because in the book Atticus, to him was the perfect person and after reading the book I understood and thought it was perfect. Today, years after autism has come into our lives, he feels a bit differently. Now he feels that the name is perfect because he feels that our son is turning him into Atticus Finch.

Atticus has severe regressive autism, he was also diagnosed as non-verbal and with this comes many difficulties. Through all these difficulties we ourselves have changed, we have a better understanding of those with “special needs” (I kinda dislike that term) and we have learned that what the majority think of things like autism; simply aren’t true. Like those with autism (or other ‘special needs’) are less intelligent, cannot understand, cannot relate, cannot have an imagination, cannot recover, cannot be successful in life etc. There are no cannots in this house, we have dropped ‘mainstream’ falsities and we all strive every day to work through the things we were told cannot be done.
Although my views are that as a parent and not a person with autism, I understand a lot of what people with autism are experiencing. I owe my son and other with autism for this; if not for you I would only know the technicalities and not the personal experience. The world is seen in a whole new light now because of understanding. I hope that my posts will help other parents, I hope that other parents who have a child on the severe end of the spectrum to see past all the gloom and heartache and above all I want to give parents hope. Hope that not all is lost, that the mainstream knowledge of autism is outdated and that ‘recovery’ is possible.

I can promise one thing with my posts; I don’t hold back. I will tell you like it is without skipping the bad stuff. I will challenge your ideas about autism, medicine and mainstream.

My name is Nicole and I am an Autism Mom


THIS is severe autism with possible severe Intellectual Disability (ID). We don't know.

I wrote a prospective letter to Brittany Nobrega, an young adult affected with extremely severe autistic disorder.
I wrote a prospective letter to Brittany.

Dear Brittany Nobrega,
I'm sorry to hear that you were abused by your care-taker and that you suffered terribly as a result. Unfortunately, in the world of ASD, abuse and torture are very common. How do I know that, you may ask?

I also have an autism spectrum disorder, commonly referred to as, high-functioning autism. While I can speak pretty well, I often miss the non-verbal body language and social cues that typical people know instinctively. As a result of my social, emotional, and sensory challenges, I was frequently bullied and tormented.

While the author of this quote is partially correct, I think that you and I can both agree that ASD is a serious disability that presents many challenges.
"The irony is that for some (not all, pls don't jump down my throat) with autism - their own autism prevents them from seeing others' autism as different and far more severe."

However, I do agree with the author that my perspective regarding severe ASD is influenced by my own perspective-taking impairment caused by my ASD.

I have some questions for you, Brittany.

Have you heard of Jeremy Sicili-Kira? I'm going to assume that you are like him. If you had different care-takers who bought you a laptop, would you be able to type on it?
I detest when other people speak for people with ASD. As I always say, I have autism, and I can speak for myself (courtesy of speech therapy and other training).

For the sake of experiments (don't worry, I'm not Big Pharma), what would happen if we put you in all Honors/Advanced Placement classes with a para-professional (aide)? Would you become high-functioning? This, at least in two subjects, is what I would have preferred when I was in high school.

What would happen if we gave some biomedical treatments that have helped so many with ASD? First, we have to de-infiltrate your care-takers from the teachings of our medical establishment.

What would happen if we enrolled you in a community college? I have been attending one since 2009.

Do you ever feel "retarded?" I do, but I know that I'm am NOT .
- Katie

P.S. I wish you were on Facebook so I could ask you, DIRECTLY."


Guest Post By Angela

 We have a guest post today by Angela, Marissa's sister. Marissa is a 21-year-old with autism.

"i am 18 years old. my sister can make me very angry sometimes, but i wouldnt trade her for anyone else, otherwise she wouldnt be my sister. sometiems i wonder what things would be like if she did not have a disability. i wish i could experience a "normal" life. but there is no point in thinking this way, since i cannot change her, and i love her just the way she is
Marissa is challenged in the areas of social skills, learning abilities, speech, and other activities that are normally performed independently. However, she is a very good swimmer. She can swim for hours if someone does not tell her to get out of the pool. She also enjoys music and dancing."

Sunday, August 12, 2012

Hello my name is Bill Peters, I am 30 years old , Started a Support and Social group called 3 Rivers Autism Outreach, I am working on Autism Acceptance and the Idea that people with Autism need to have lives that make them happy and have them feel worth while.

I am looking forward to blogging here in the future.