Another Senseless Tragedy...

People who prefer to find blame in vaccines, often look at us who embrace neurodiversity as being unrealistic. We even are accused of not having our children's best interests in mind. First and foremost, after years of studies continue to find no link between vaccines and autism, why is there still a debate? Why is anyone wasting their breath on this? All the money and media mention--for what?

Those who hold onto the hope of a cure for autism and support pouring millions into such research, also look at us in this same light. Let's be brutally honest here: there will never be a true "cure," not in the traditional sense of the word. What will come in the next several years, most likely, is a prenatal screening for well-documented "autism genes" or other markers for autism. Then, just like we've seen with Down Syndrome, pregnant women will be counseled to abort their fetus based on the positive autism test. A secondary "cure" would most likely be a combination of medications and supplements. There will never be a "magic pill" or procedure to "rid" someone of autism.

So, with all of that in mind, these same people continue to attack those on the ND side of things. We are called every name in the book. There is plenty of confusion as to what Neurodiversity means (as well as what Autism awareness should be), and what so many of us are fighting for. For me, and for most of the parents I know, we are fighting for better services for our children. We want programs created and funded now for teen and adult autistics. We demand better teacher training, employer seminars, first-responders' awareness on autism. We see a dire need for better options for autistics and their families: living arrangements, vocational and education programs, and so on. We also desire our children to be accepted by society, and at the very least tolerated in our communities. We want the world to embrace our child, and see all the gifts we see (for all our children, all over the spectrum).

Our concerns stem not only out of the love we have for our children, but from our fears that arise hearing about stories of abuse. Talk about intervention and treatments (that are respectful to autistics), yes. But how can any of us spend another minute blaming vaccines and promising cures, when our children are being abused, neglected, and killed?

Gabriel Poirier was nine years old when he was suffocated to death at his school. The details of his death are horrifying, and we yet to have all of the facts (like, why the teacher thought this was a viable option?). From The Gazette:

On April 17, Gabriel began to disturb his class with loud sounds. After being told repeatedly to calm down by a teacher, he was rolled in a weighted blanket. With his arms by his side, he was left on his stomach for over 20 minutes with only his toes exposed.

When the teacher went to check on him, he was "listless and blue in the face," the Coroner's report said. The teacher called 911 but the boy was already in a deep coma and passed away the next day in the Sainte-Justine hospital.

"He was a very gentle boy. Sometimes he was loud, but he was never aggressive or violent," Gilles Poirier, the boy's father, said today.

The parents' lawyer, Jean-Pierre Ménard, said vulnerable children like Gabriel need better protection.

"We're asking Minister Courchesne to implement a legal framework to regulate how these children are handled," Ménard said.

To think of how terrified Gabriel must have been as he gasped for breath, and the pain his parents are feeling--we cannot look the other way. My heart goes out to his family and friends. We must all learn from Gabriel's story, and not let his death be in vain. This is yet another wake-up call: our attitudes toward autism and autistics needs to change. What is it going to take to for all of us, autism parents and society, to come together and ensure such a tragedy never happens again?

In the words of Gabriel's father:

"Things, or action should be taken to prevent this, to never happen again."

For more information on how you can get involved, please visit these sites:

End Abuse of Children in Residential Programs: ACT TODAY!

APRAIS - The Alliance to Prevent Restraint, Aversive Interventions, and Seclusion

CAICA - Coalition Against Institutionalized Child Abuse

High Functioning? Then Shut Up!

That's the message sent loud and clear by nearly every autism organization (in the media spotlight: TACA, Autism Speaks, et al.) these days. They don't care what you were like as a child, what your struggles were, or the issues you face now. If you are able to speak to reporters or blog or live independently or hold down a job, they don't need you. Rather, they'd prefer you just shut up and go away.

Oh, but wait...but they do need you. Sometimes, at least.

A lot of the comments from the ABC piece were, as expected, the same regurgitated message we hear lately. The idea that those with Asperger's (or that are "high/er functioning" as they put it) can't possibly be on the same journey as those with classic autism. Don't listen to them. That's not the autism my child has! Those people have no right to speak for the autism community! And yet, it's amazing who they do want to represent the "autism moms" of the world. It's also interesting to see how these people determine what "high functioning" is and what it isn't. It's also curious to learn their criteria, if they have any, for "Autism Recovery."

This group (typically the anti-vaccine and pro-cure folks) presumes that an individual living with Asperger's has not faced any struggles. That they don't have sensory issues, meltdowns, social or communication issues. Basically, in their eyes, they have no business being on the autism spectrum (hello?!). They apparently have never been bullied, don't have problems at school, have no trouble living independently, and all can easily find jobs. Anyone who knows an Aspie or someone who is (as others would classify as being) "higher functioning," can attest, this is not the case. Not to mention, the now-Aspie adults who were previously diagnosed with classic autism as a child. Unless those individuals can be used to further sell their "cures" and you agree to be exploited, labeled "recovered," they don't want to hear from you.

They treat us parents who find joy in our autistic children in the same manner. We are crazy, foolish, and even sometimes seen as harming our children. Really--harming them by not injecting them and not forcing supplements down their throats. Harming them by not subjecting our children to needless and harmful chelation and a myriad of other "treatments." Harming our kids by letting them know we respect and love them? We parents who are not suffering, we are a major inconvenience for these organizations. The parents and autistics who believe in and promote neurodiversity, are even described as being "radical."

Neurodiversity is about real civil (and human) rights. People all along the spectrum are being abused, discriminated against, and are not given equal protection. Many have to fight (and sometimes lose) in order to get the right to an education, to work, and even to participate in our culture--and that is the entire spectrum.

It's interesting to me--those who are seeking a cure (and are disgusted by acceptance or "neurodiversity"), are very quick to use the "1 in 150" stats, and employ them to make a case that there is indeed an "autism epidemic." Yet, they continually discredit adult autistics. When autistics speak, they are the first people to dispute what is being said.

The "1 in 150" includes the entire spectrum. You can't pick and choose how you interpret that number (the one that points to an "epidemic"). You can't use a certain subset of autistics only when they, as a number or statistic, suit your needs.



I had drafted this last week just following the Neurodiversity segment on TV. I read Joy of Autism last night, where this myth along with others are brought to our attention:

4. Biomed autism advocates like Jenny McCarthy's TACA group need and use "higher-functioning" autistic people in their statistics to try to prove there is an "epidemic" on the one hand, while stating on the other that they are not "severe" enough to speak for autistic people.

These myths really need to be addressed by all of us, and especially by groups like TACA, Autism Speaks, and so forth.

Days of Our Lives, With Autism

Yes, autism once again comes to daytime soaps. "Days of Our Lives" will have an autism story line, starting June 24.

BURBANK, CA (June 10, 2008) – The growing autism crisis – which has recently drawn increasing national attention -- is addressed in a personal manner beginning in the June 24 episode of NBC's daytime drama “Days of our Lives” in an insightful story based on the experiences of the series' head writer, Dena Higley...

...Dr. Lexie Carver (Renee Jones) and Commissioner Abe Carver (James Reynolds), are told their 3-year-old son, Theo, has autism. The news of Theo's diagnosis is understandably hard for the couple to comprehend, but through the love and support of family and friends, and the love for their son, they learn a lot about their family and how to cope with this tremendous, new challenge.

Higley is married to Mark, her husband of 21 years, and together they have raised four children -- two biological and two adopted. Their eldest, son Connor, was diagnosed with autism at the age of 3. Now 19, Connor drives his own Mustang, has a black belt in Tae Kwon Do, recently graduated from high school and is preparing to go to college in Florida in the fall...

You can read the full story here. It's complete with words like "emotional trauma" and "autism crisis." Oh, they do mention "hope" and "achievement" as a "possibility." As if it's something that may happen. I think the story of Connor Higley (an autistic individual who has a black belt, drives, and is on his way to college) has potential to show the world another side of autism. But I won't hold my breath.

This may be the last happy family portrait for the Carvers, knowing Autism Speaks' record. The early days of diagnosis (and perhaps all of childhood) will be dark and depressing we can assume. I wonder if there will be any silver linings, if they'll show any good from Lexie and Abe's day with their autistic child. One has to hope that at the very least neither Abe nor Lexie say they are pondering driving off a bridge with their autistic child.

I guess we can breathe a sigh of relief, since Autism Speaks has yet to fall to Katie Wright's belief in that autism is caused by vaccines and that biomedical intervention is the only way to go. Phew. Could you imagine TACA or Safe Minds taking this on? You'd have a child who was talking, smiling, giggling on the day the receive their vaccines. The next morning, the child is "in his own world," and the mother cries out "somebody took my son!" They are angry and devastated. Doctors lie to them, say there is nothing wrong, then ultimately diagnosis this child with autism. Desperate, they find their way to a DAN! doctor, spent thousands on various tests, and have their answer. The story line could be "vaccine injury" or "mercury poisoning" etc. They would show the child's treatments: GFCF diet, 20+ supplements, B12 injections, and chelation. Over the weeks, the child would begin speaking and "coming back" to the family. Ah yes...what a soap opera that would be.

On a side note, there's this study using soap opera (yes, soap operas) as therapy for autistic individuals.

April Is Over...

April is officially over. And all I can think of is John Lennon's "Happy Xmas (War is Over)" song...

So this is May First
And what have you done
Another month over
And a new one just begun
And so this is May First
I hope you raised funds
The near and the dear one
The old and the young


So what have you done?

$1,402,639 was raised thus far (assuming this is final amount, as campaign was said to end yesterday, May 2) from the Toys R Us/Autism Speaks campaign. It does not clarify if that is the online donations, or a combination of in-store and online funds raised. So what will Autism Speaks do with this money? And what will they do with the millions and millions they continue to raise? I urge Autism Speaks to help, the young and the old. Create programs and services, or create separate, smaller agencies to handle the needs of older children and adult autistics. That is what's truly needed.

I was glad the other day, as I checked out of the store, that this was the last time I'd see these. At least for now. At least until next April...






I didn't feel obligated to do anything for "Autism Awareness" month. Sure, I blogged on it, I watched CNN on that day, I read some articles and studies, I watched some documentaries, I spoke to family and friends, I was inspired, and, of course, lived each day, quite "aware" of autism. We make people "aware" of autism (& also of things like seizures and feeding tubes) whenever the situation presents itself. Perhaps at the playground, a friend's house, or elsewhere. I don't feel it necessary to educate every person I come in contact with. Mostly because, I am raising two young children--a handful enough out in public. I simply don't have time to give even a mini Autism lesson to the strangers who may stare or whisper. And, to be honest, that reaction typically only comes following two things: a meltdown or if they see my child's feeding tube. Both times, I'm fully engaged in my child and don't have a moment to be concerned with others.

People generally smile, even if they appear perplexed, if they catch my child "stimming." I don't think they see a child jumping or walking in a circle or even flapping and think "autism." They most likely see an excited child, perhaps a hyper one, and usually a happy one. For some, if they know what "stimming" is, they may see that, but then they'd also understand it. So, did I do my part for the month of April? I'd say yes. But then again, I do that same "part" every month of the year. And the biggest bit on "awareness" you'll hear from me in person is the need for adult supports, respect for autistics, and the disgusting reality of eugenics.

One of the COOLEST things I came across during "Autism Awareness" month was here, please check it out.

NASCAR & Autism Speaks: Maybe Some Potential Here

NASCAR Race to Benefit Student Clubs for Autism Speaks:

DOVER, DEL. (April 2, 2008) – Dover International Speedway and Best Buy officials announced today that the June 1, 2008 NASCAR Sprint Cup Series race will be named the “Best Buy 400 benefiting Student Clubs for Autism Speaks.” A variety of initiatives are planned for Dover's May 30 – June 1, 2008 NASCAR race weekend to increase awareness and raise funds for Autism Speaks. Last year's June NASCAR Sprint Cup event in Dover, also benefiting Autism Speaks, saw Martin Truex Jr. pull into Victory Lane for his first career win at the Monster Mile.

Student Clubs for Autism Speaks (SCAS) helps further the mission of Autism Speaks by creating the opportunity for students to engage and actively participate in positively affecting the lives of people with autism. Through education, awareness, friendship and fundraising, SCAS includes students at the middle school, high school and college level.

I had not heard about these clubs prior to this headline. There is plenty of information about Student Clubs for Autism Speaks (SCAS) on their website. There are a few issues I take with this program. The fact that "to fund global biomedical research into the causes, prevention, treatments and cure for autism" is part of their purpose statement, aggravates me. I've made it clear in the past where I feel this research looking into "prevention" and "cures" will end up.

Another issue, this club is essentially a mini Autism Speaks, one that's primary focus (again) isn't the inclusion and acceptance of fellow (autistic) students, but rather raising money. For example:

(a) Fundraising: All Clubs must field a walk team in their local Walk for Autism Research. Those outside of a Walk region should go to the Autism Speaks website for assistance. Other fundraising activities may be undertaken at the discretion of each Club.

What I do like is this part of the purpose statement:

...to promote an environment of acceptance for students with autism;

This should be the first and most predominate statement for such a club. Why can't we simply have a club that promotes awareness and acceptance, along with inclusion? A club that's members would welcome autistic kids, and truly become 'aware' of autism. Such a group could also be helpful for siblings of autistics. From their perspective, they could help educate the members, and it could also be empowering for them--knowing they were helping to pave the way for social acceptance of their brother or sister.

The messages that our children and teens are hearing with regard to autism will alter how they view autistics in their adult life. If your view on autism and autistics is negative, that you hate it, that it should be wiped out, you are teaching your children that when they come in contact with an autistic person they should stay away. When that same child is an adult, they won't hire an adult autistic, they won't vote for measures for support services for autistic individuals. The opposite is also true, thankfully. If you raise your child, teaching them compassion and acceptance of others, then they will reach out and say hello to their autistic peer. They will understand what autism is, and not run from it or from autistics. This child, when they are an adult, will gladly hire an autistic person, and see that services are available to those on the spectrum.

I'll have to see how these clubs evolve and change over the next few months and years, before I make my final opinion on them. From what I can tell, there are not many of these clubs nationwide--yet. It would be great if in time, the main goals for these clubs are to promote friendship and understanding between students, both on and off the spectrum. Only time will tell which direction this club, and Autism Speaks as a whole, will take (a shift and change in priorities is possible). There is some potential here.

Edible Awareness???

Pretzels??


Autism Awareness????

Has anyone seen these yet? Better yet, has anyone eaten one? Now I'm a big fan of pretzels, but I don't think I could bring myself to eat these. From the Bachman Company website:

Our 100 calorie packs are all natural, low in fat and cholesterol free. Solve your snacking puzzle with this good for you delicious pretzel. The Bachman Company has been and continues to be a proud sponsor and active supporter of Autism Speaks we are donating 5% of our proceeds from the purchase of this product to Autism Speaks.

Interesting to note, is that Bachman lists their gluten-free products, and guess what? These puzzle-piece pretzels apparently are not gluten-free. Is that ironic or what? Kind of like when Rice Krispies was involved in an "Autism Awareness" campaign.

The puzzle pins (which, it seems everyone from actors to coaches wants to wear), ribbons, magnets, even toothpaste (another irony, since the toothpaste was apparently not gluten-free either, and also contained fluoride, yet another supposed--and unproven, cause of autism), and jewelry were one thing. But edible puzzle-piece pretzels? Seriously? Exactly what kind of "awareness" will come from this?

I can only imagine what will be next...

FDA, Prozac, & Children with Autism

The FDA has granted "Fast Track" designation for a new orally disintegrating tablet of fluoxetine (Prozac), for use in children with autism.

4/10/08: PRESS RELEASE

Neuropharm Group plc (AIM: NPH), a speciality pharmaceutical company focused on neurodevelopmental disorders, is pleased to announce that the US Food and Drug Administration (FDA) has granted Fast Track designation for Neuropharm’s program to develop NPL-2008 in the treatment of Autism Disorder.

NPL-2008, a new orally disintegrating tablet of low-dose fluoxetine, is currently in Phase III development for the treatment of the core symptom of repetitive behaviours in patients five years of age or older with Autistic Disorder.

On its website, www.fda.gov, FDA states: “Because fast track products are intended to treat serious or life-threatening conditions and must demonstrate the potential to address unmet medical needs for such conditions, an NDA for a product in a fast track development program ordinarily will be eligible for priority review and FDA may consider for review, portions of a marketing application before the complete NDA is submitted. Fast Track is intended to facilitate development and expedite review of drugs to treat serious and life-threatening conditions so that an approved product can reach the market expeditiously.”

The NPL-2008 program received Orphan Drug Designation from FDA in 1999, giving the product the potential for seven years of market exclusivity on receipt of regulatory approval. In addition the FDA Office of Orphan Drug funded a clinical study in children and adolescents at Mount Sinai School of Medicine in New York followed by a second study in adults.

Neuropharm’s current Phase lll study (SOFIA) underwent Special Protocol Assessment by FDA in 2007. The study is currently ongoing at 17 sites in the US in collaboration with Autism Speaks, the US advocacy organization, and its Clinical Trials Network of expert investigators. The results from this randomised, double-blind trial in more than 120 child and adolescent patients with Autistic Disorder will form part of the NPL-2008 New Drug Application, which is targeted for submission to FDA in Q4 2008.

Robert Mansfield, Neuropharm’s CEO, commented: “We are delighted to announce that FDA has granted Fast Track designation for our program. The point was made earlier this month on World Autism Awareness Day that more children will be diagnosed with autism this year than with diabetes, cancer and AIDS combined. Fast Track designation emphasises the importance we believe should be accorded to this condition.”

This trial will be the first under Autism Speaks' Clinical Trials Network (CTN):

SOFIA is the first industry-sponsored trial for Autism Speaks' Clinical Trials Network (CTN), and will include over 120 children and adolescents with autism enrolled across the U.S. at participating CTN sites. The study is evaluating the efficacy of Neuropharm's new melt-in-the-mouth formulation for the treatment of repetitive behaviors in autism. This study will be a crucial part of an application to receive an autism indication for this formulation of fluoxetine.

I have no doubt that for those parents whose children are presently taking Prozac or who are currently considering it, such a trial will be a relief. With the majority of medications, trials are typically done on adults. The effects of the drugs on those under 18 are often unknown (and, especially unknown when it comes to individuals with autism). Bad reactions in the pediatric community only come to light once a serious side-effect has occurred.

Prozac was approved for pediatric use in 2003 and is generally well-tolerated. A trial focused on a pediatric autistic population (for both efficacy and side-effects) will benefit many. A dissolving tablet will be much easier for children to tolerate, as well.

The Money Trail...

Where will all the money raised by Toys R Us go?

Autism Speaks and Toys R Us have had a relationship for over a year now. This year, it appears, they are going all out. Which, like I said earlier this week, one can only wonder what all will come in April. In addition to the in-store donations, "the world's greatest toy store" is also accepting them online. At the time I write this, $539,448 has been raised (which, is up over $20,000 from the $519,229 they were at when I began drafting this last night). They are raking in, on average, more than $30,000 a day. Given that, they very easily could raise over 2 million dollars. This campaign began on March 2nd and continues until May 2nd. We all know where this money will go to: research, research, research--the Autism Speaks mantra. Of course, some money will go toward entertainment, catering, private jets, salaries to people like Allison Tepper Singer, and who knows--maybe an Autism Everyday Part II? Read about it on the Autism Speaks' website (their 2006 report, I can't wait to read 2007's). As Lisa Jo Rudy writes,

"Personally, I'm encouraged to see community grants and insurance issues are making it to the front page of the Autism Speaks website - though I'd love to see the organization create a division dedicated to living - and thriving - with autism."

We shall see if Autism Speaks ever gets a clue and decides to actually support autistic individuals. Then perhaps so many of us wouldn't cringe when we checkout at the Toys R Us, turn on Oprah, or see that the Sundance Channel is premiering "Autism Everyday" on April 2nd. I won't hold my breath though. Here's how they prioritize those living with autism, as per the "goals" statement from their website:

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

Notice the order:
1. make LOADS of money for research into causes, prevention, treatments, and cure
2. raise public awareness (via depressing "documentaries" apparently)
3. and, if and when we get around to it, "bring hope to all who deal with the hardships of this disorder"

They never actually say they want to help autistics, or create programs for teens and young adults, or support job-training, independent living, etc. for adult autistics. Bringing hope is a rather broad term. What hope exactly are they bringing? That one day a "cure" might exist, or that prenatal screening will be available? Once again, painting the bleak picture of the "hardships" we live with is getting rather old by now. Now compare Autism Speaks' goals with The National Down Syndrome Society's values and The National Autistic Society's vision and mission statements. Keep in mind, also, that the NDSS began in 1979 and the NAS has been around for over 35 years.

I'm not sure what "puzzle" Autism Speaks wants the public to think they are concerned with solving. To those of us who take personal offense by their messages and continue to receive zero support from them, we understand what this "puzzle" is. They promote the idea that if your life is touched by autism, you are miserable, your child has been "stolen," you are in debt, your marriage is falling apart (if it hasn't ended horribly already), and your life is one long nightmare. When you combine those viewpoints, the statements made by the "leaders" of Autism Speaks, read over what research their money is going toward, and see their tax return, it becomes clear. The puzzle they are struggling to solve is how to end any future generations of autistics. They want nothing more than to annihilate autism, all together, all of it--all future autistics, and frankly nothing else. They've even convinced politicians like Hillary Clinton to make public statements about working to "prevent and cure anything along the Autism spectrum." As for the autistics living (and thriving!) today, well, let's just disregard them altogether.

Autism Speaks could learn a lot from The National Down Syndrome Society and The National Autistic Society. The day that Autism Speaks actually reaches out to Autistics, and makes supporting those individuals a priority, then perhaps I would like to "help autism" at the check-out line.

Would I like to "help Autism?"

Good question. Not one I expected to hear at the toy store. Would I like to help autistics gain acceptance and reach their individual potential? Absolutely. Is Autism Speaks doing that? Not at all.

After surviving a trip to Toys R Us with my two kiddos, we were checking out. I heard the word "autism" uttered while I shopped, and wondered why. I was oblivious, walking through the store with my girls, of all the signs like the one above. I wonder why? Hmm..two girls, tons of toys for them to rummage through, and the occasional meltdown. Perhaps that was it? Or maybe I just never expected to see Autism Speaks' propaganda displayed throughout a toy store.

So, we are paying and the checkout associate says to me, "Would you like to donate a dollar to..."

And I am thinking, "sure!" I often give a dollar or two upon checkout--for diabetes, heart disease, cancer, and the local children's hospitals. The woman continues,

"...to help Autism?"

I actually let out a "hah!" It was just a funny question to be asked, given the company I was in. It took a second for the question to really set in. The woman looked at me oddly. I looked around, and then asked "where does the money go?"

"Autism Speaks" and as she said that, I saw the big puzzle poster above the register.

I say to her "no, thanks, we have other..." and I trailed off, realizing two things:

a. this woman was only doing her job & I got the idea she didn't care if I donated one way or the other
b. how much time do I really have to explain why I don't agree with Autism Speaks?

My older daughter looked up at me, and I knew what she was thinking (why don't you want to "help Autism" mom?). I bent down and whispered in her ear that we prefer to help in other ways. I think she too was amazed that "autism" came up while we checked out at Toys R Us.

As I finished paying, I saw a big roll of stickers by the register. They had the infamous puzzle piece, with the words "Autism" and "I helped solve the puzzle," along with the Autism Speaks and Toys R Us logos. It was at once surreal and all rather humorous to me (I have a sick sense of humor at times). The posters, the stickers, all of it.

So, we left with our bags. I paused in the exit area, and snapped the picture above with my cell phone. I'm not quite sure what to think of the poster. I suppose I should be glad that these pictures were not used:

or

Those two often pop up if you Google "autism" in images. The first was used in an ad campaign by NAAR (now merged with, guess who, Autism Speaks). It's disturbing, actually, when you search for autism images. The majority are dark and depressing, others shout that mercury is poisoning our children. Pictures really are worth a thousand words. Unfortunately, from Autism Speaks,' TACA,'s and other similar groups' perspective, pictures are worth thousands of dollars and that is all they are concerned with.

The cute little boy, covering his face and all the puzzle pieces, plastered throughout Toys R Us? I honestly don't know what to make of it. I suppose I'm glad this image is different from the many others. The child is making eye contact, for one. I think having him cover his face was an attempt to make him look embarrassed, trying to hide (his autism?). But, as a parent, I saw a playful look, perhaps peek-a-boo or peeking while playing hide-and-seek?

Let's Be Friends...Maybe

Barnes & Noble, Inc. has announced that 500 stores across the country will host special "Storytimes" for "Autism Awareness Month." They are partnering with, of course, Autism Speaks. I plan on writing about the various activities, publicity, et al that will surely come along in the month of April. There will hopefully be some really good, positive events. Time will tell what message Autism Speaks and others will deliver. All I know is, watch out (!!), because 2008 will surely be the loudest year for "autism awareness" and the many forms it comes in.

The fact that Autism Speaks is involved here, I am skeptical. But, from the initial looks of this, I feel it could be a good thing. The books featured on the Barnes & Noble website include "The Game of My Life," "The Autism Acceptance Book," and "Look Me In The Eye." Granted, there are others that I'd prefer not be on the list, but at least a few good ones are there. I have been contemplating ordering this book on Amazon (that will be featured for these events), as it seems to have a positive message. One of my favorite books for children is "My Friend With Autism" by Beverly and Craig Bishop (parents of an autistic child). This was helpful not only to our older daughter, but to family and friends too. It explains the various features of autism, but in a positive manner, like how "my friend" has super hearing, etc.

I will try and locate a copy of "Since We're Friends: An Autism Picture Book, and write my review here. Here is some of the information from the press release:

On April 2, Barnes & Noble stores across the country will host celebrity Storytimes in cities including New York, Los Angeles, Chicago and Dallas. Celebrities will read books that encourage compassion and respect for individuals with autism and other disabilities.

I hope that these story hours will really achieve that goal. Compassion and respect is what's needed most when it comes to how the public reacts to autism and autistic individuals. We have had enough years of fear and drama, let's move on already. Parents need positive support, encouragement (not stares!) from others when our child is having a meltdown in the store, and our schools need to think outside of the box to help our kids reach their potential. And, above all, we need to support adult autistics and their families. Autism Speaks is rolling in the dough, perhaps now they can focus on what autistic children and adults need more than anything: services and support, primarily in the teen and adult years.

"...Steve Riggio, chief executive officer of Barnes & Noble, Inc. "Our special Storytime events, in partnership with Autism Speaks, are a unique way in which we can help spread knowledge and promote understanding of this disorder, which affects so many children each year."

Again, I hope they are able to increase knowledge (in a non-stigmatizing way!) and increase understanding for the public and for the peers of autistic individuals.

...Suzanne Wright, co-founder of Autism Speaks. "These in-store events will do a great deal to foster a sense of tolerance and understanding, something families affected by autism desperately need as they face the many day-to-day challenges posed by this disorder."

A sense of tolerance and understanding? Wow, did I miss something here? Is Autism Speaks no longer talking about kicking autism to the curb or throwing away this generation of children? Are they no longer celebrating Allison Tepper Singer's disgusting confession? I applaud them if they've actually turned over a new leaf. I'm not naive though, and the images from Autism Everyday are still very fresh in my mind. It would be wonderful to have an April that focuses on the many gifts and talents of autistic individuals, on the joy that is to be found in life with autism, and the need for (adult) services and acceptance.




**As usual, bold added by the author!!!

My Autism Everyday: Autism Knocked On The Right Door

“Autism knocked on the wrong door.”
It's the quote heard round the world, from Suzanne Wright, co-founder of Autism Speaks and grandmother to an autistic child. It's been bounced around for a couple of years now, but it's one of those lines that always runs through my mind. It's really irritated me. It's supposed to be a rallying cry, I suppose. For anyone who has seen Autism Everyday, it starts to sound more like an invite to a pity party.

For me, I find it hard to separate autism from the individual. So, when I hear something like autism coming to the wrong door (family), I read this child came to the wrong family. A burden is deeply implied in that statement. I never prayed for a special needs child. During my pregnancy, I didn't dream of doctors' visits, surgeries, medication, or therapies. I don't think an expectant parent ever wishes for that. I remember thinking how easy the second-time around would be. We'd already been through the concerns and struggles first-time parents contend with. We were all done with that, we were seasoned veterans. People complimented my husband and I on our parenting skills, and we were applauded for the amazing "job" we were doing with our daughter. She was polite, outgoing, and intelligent. We received nearly all the credit for that. ;)

My second pregnancy was very different from my first. I was nauseas for the first 5 months, other than that, I actually felt better with my second pregnancy. I felt like I knew what to expect, the hows and whens of all that comes with bringing a new baby home and raising a child. We were so excited and couldn't wait to expand our family.

Our second child was blue and not crying when she was delivered. My heart sank, that is a horrible feeling. You expect joy and celebration in the delivery room. Not silence, with doctors and nurses descending upon your child, and nurses cautiously smiling at you, reassuring you it will be okay. I laid there, watching them assisting my little baby, trying to get her to breathe. My husband and I would nervously glance at one another, and then back to the crowd hovering over our baby. The medical team was successful, and started walking toward me so I could finally hold her. My sigh of relief was interrupted when the doctor paused and had to bring her back to the bassinet, she stopped breathing on her own, again. This time, she quickly responded to their help, I was able to briefly caress her cheek before they whisked her away.

That was my first clue that the second time around may not be a piece of cake. The next day, we found out our daughter had two holes in her heart. She also developed jaundice that required therapy for a week following her birth. Shortly thereafter, the reflux and stomach issues began. The bumpy road continued. It wasn't long before my husband and I realized that this was unlike anything we'd gone through with our first child. All the experience that we'd gained, all the answers we thought we had, now meant very little. I donated my "What To Expect The First Year" book, and realized my daughter was going to write her own book. I had to look within myself to find strength, not a book. We surrounded ourselves with supportive family and friends, and listened to the professionals we had sought out. It wasn't going to be easy--but how does the saying go? Nothing worth it ever is.

I believe that all the challenges I faced growing up, all the experiences I've had to this point, all prepared me for raising my child. I wrote early on, about not particularly liking the praise I receive for "how I am" with my daughter. To me, it's natural. I am her mother, we are her parents, we love her. That's all there is to it. Perhaps some of us have an innate sense of caring for a child with special needs and/or autism? Maybe there are those of us who deep in our hearts realize every child, every person, deserves respect? I suppose it is possible that there are some that are better-suited to raise an autistic child than others. I for one see my daughter as a blessing, she has taught us so much, and has brought great joy to so many. All of our family, friends, and neighbors have delighted in seeing her develop and blossom. They smile each time they see her.

I can say that Autism knocked on the right door. My daughter receives nothing but love, acceptance, understanding, and patience from us. I'm honored that I get to be her mom, and have her in my life. I am also so grateful that my daughter's grandmothers (and grandfathers, for that matter) have never and would never use such a phrase, when referring to her. No, instead they have offered nothing but love, encouragement, and prayers. They have supported us from day one, always willing to listen with an open-ear to our thoughts, and what we felt was best for our child. I know, that regardless of how of my child is doing 10 or 15 years from now, our family will be there for us, and more importantly, for her.

Autism In The Marketplace

My husband sent this article to me, it's on Newsday.com. It's an interesting piece, and I'm fairly certain this is the first one of its kind I've come across. It discusses adult autistics (yes, Jenny, they really do exist), dealing with finances, living independently, and the difficult issue of legal guardianship. The story is from the parent's perspective. It deals mainly with adult autistics who would seem to need little, if any, services. Yet, they still run into major issues with finances and have difficulty with other day to day interactions.

The story closely mirrors the ones I hear from families whose child is considered by the school to be "high functioning" and is dropped from special-ed or services. These children skim by, many drop-out or have major issues, especially in high school. If you can do fairly well with school assignments, sit still in class, they presume one doesn't need any extra help. They pay no attention to how one relates to others on the playground or cafeteria. If grades slip, its often blamed on the child losing interest or not paying attention. It often takes quite a fight to get services for the child, and prove to the school that help is needed. It appears, this same mind-set holds for when these children become adults.

While there are many adult autistics who are able to hold jobs and live independently, or others who are able to do so thanks to support services and help from their family, there are plenty that are slipping through the cracks. How many are homeless or institutionalized? What is the crime (against them), murder, or suicide rates? What number of them suffer with psychological issues, alcoholism, or drug addiction? These are areas that few have looked into, most would rather look the other way. It's not their problem right? And, now that we have "treatment" and someday soon a "cure," why do we need to concern ourselves with that right? It will be their problem, not mine. "I've got my kid on 50 pills a day plus some injections, a hyperbaric chamber, sauna, chelation, and more, I don't need to worry about him 'having autism' when he's 18, right?"

I realize "early intervention" and all is important, but to be honest, I worry more about what comes after age 18 or 21. My daughter did receive early intervention from the state, as well as private therapy, and we did a lot of "play therapy" at home. It wasn't really therapy we did at home, so much as it was we found new ways of playing and engaging our baby/toddler. We had to learn a different way to play with her, its been that way since infancy. My child thinks and acts differently, therefore, we have learned new and different ways of interacting with her. Basically, I feel if you have an open mind and a kind heart, you can help your child in those early years. The help is there if you seek it, and there's plenty you can do at home. Just be open to new ideas, be patient, and compassionate.

It's what will happen once my child turns 18 or 21, when the school will no longer assist us, that concerns me. I'm not going to assume her level of independence, at this point. We will support her in every way, and she will continue to make us proud--where ever the road leads her. We of course have some concerns over her physical and neurological health, but are hopeful those will improve with time. Putting those aside and solely thinking in terms of autism (along with her sensory and psychological issues), and her future--every aspect of what will happen in adulthood is concerning to me. If she is able to live independently, will services be available to assist her if need be? Will college be a feasible option? Will she be able to find a job, are there vocational programs? What would happen in an emergency, or if she had to deal with first-responders? Will she be able to find proper medical care and pharmaceutical assistance? What resources will be available?

This story highlights some of those concerns. I think whether your child will continue to reside at home or live independently in adulthood, there are a mountain of questions, and very few answers. We all know the majority of money that autism charities receive is going toward research, studies, media, etc. Very little goes to actually benefiting autistic children and their families, almost nothing goes toward autistic adults. Since the pro-cure groups, at least some of them, are now admitting that our autistic children are becoming autistic adults, perhaps there will be more stories on this. Hopefully, as their children enter adulthood, they'll realize the need and use their media savvy and celebrity friends to get more programs and more money flowing in to benefit adult autistics.


FYI: The link to the article is found in the title, if that doesn't work:
http://mobile.newsday.com/news.jsp?key=152152&rc=bu&p=1

Autism Speaks' 100 Day Kit

Autism Speaks has created a "100 Day Kit" for newly-diagnosed families. It is said to walk a family week by week, through those first 100 days after receiving an Autism diagnosis. I've never been a supporter of Autism Speaks, as anyone reading my blog can plainly tell. But, I am also one to give credit if and when credit is due. My initial reaction for this, is that it could be a great resource for parents. But, having vivid images of "Autism Everyday" and most of the talking points coming out of Autism Speaks reps, I also fear what could be in this kit.

The 100 Day Kit includes basic information about autism and dealing with the news of a diagnosis. The personalized kit lists local service providers, support groups, recreational activities, sources of legal information, conferences, local autism and disability organizations and information about the local chapter of Autism Speaks. It provides insight into getting services for a newly diagnosed child and explains various available treatment options. A week-by-week action plan helps walk a family through the steps it needs to take to ensure that it is on the right track. The kit also includes a glossary of terms associated with autism, as well as a safety plan and a list of recommended books and informational web sites.

Will they advise newly-diagnosed families watch their "documentary" (not how I would categorize Autism Everyday)? Who exactly are the service providers? What books are they recommending? What treatments do they suggest? Do they make mention of DAN! or chelation etc.? My other concern is the support groups they list, the majority of them are cure-related or pathetic "why me?" gatherings. Those first 100 days are crucial, and at a time when parents are emotional and confused, a kit like this will make a tremendous impact. This issue is: will it be a positive impact? Will parents find themselves three months later seeing all the potential in their child? Or, will they be the next bunch of parents for Autism Everyday Part II?

The 100 Day Kit was created by the Autism Speaks Family Services staff in conjunction with a professional advisory committee comprised of twelve autism professionals, a parent advisory committee that included parents from across the country, and members of the Autism Speaks Family Services Committee.

Shuttering to think exactly who was a part of this committee. The fact that Allison Tepper Singer is their executive vice president for communications and awareness, tells us a lot. Autism Speaks' irresponsibility in picking their "leaders" is apparent. I want to get my hands on this kit, it is available online. When I have some more time, I will read and digest its contents.

I hope this will be a helpful tool for families, it would be one of the first major things Autism Speaks has really done that would personally touch families. Only time will tell if this ends up being a saving grace for Autism Speaks, or the same old, disparaging, negative views we are accustomed to from this group.



The press release is available here: http://www.autismspeaks.org/press/100_day_kit.php

What Autism Speaks Chooses To Report On...

From the most recent newsletter from our friends at Autism Speaks:

IAN Reports on Treatment Methods Used by Parents
A new finding from the Interactive Autism Network (IAN) indicates that children who are registered in the database with autism spectrum disorder are receiving, on average, five simultaneous treatments for autism. This preliminary data on treatments was issued today by IAN, a project collecting information online from families of children with ASDs throughout the United States.

I have several issues with this, both the email and the project.  When I first saw that the newsletter was featuring a story from IAN, I wondered if they would ever make their recent poll to autistic adults a feature story?

As of now, here are the results:

Adults with ASD: If there were a cure, would you take it?

(total votes: 387)
Yes
9%
No
80%
I'd wait and see what happened to others
6%
Don't know

4%

Now, granted, the total votes of 387, is not quite the huge amount (too many to include all in the study) of families "suffering from," "battling," and "struggling with" autism every day.  BUT, alas, it is 387 individuals, voicing their opinion.  Since, it appears, in this project they are noting, they are taking whatever the families tell them as truth...then let's assume they would look at all surveys as truthful.  So, throw out whatever conspiracies they will have regarding who answered this poll.  

Fact is, 387 autistic adults made their opinions heard, 80% say "NO!" they would not want a cure, with another 10% very unsure, at best.  There is a 9% who would be cured.  Which, if you do the math, leaves a mysterious 1% whose answer is not listed.  Still haven't figured that one out.  At any rate, based on this survey, the overwhelming majority of autistic adults do not want a cure.  Will this ever make the news over at Autism Speaks, or anywhere else for that matter?

My further ranting...

I would not link to a site like Autism Speaks, but feel free to go to either their site or the IAN site, for the complete information on this report/project.  I've selected a few key parts below:



"IAN is a web project of the Kennedy Krieger Institute sponsored by Autism Speaks."

Let's NEVER forget this, when we are looking at anything IAN-related.

IAN Research Findings: Treatment Data
The Interactive Autism Network (IAN), a project collecting information online from families of children with autism spectrum disorders (ASDs) from throughout the United States, reports on treatments. How many autism treatments are families using at once, and what do these tend to be? What are the most popular treatments? The IAN Project hopes the collective experience of individual families can guide research priorities.

Autism Treatments: The Great Experiment
Dozens, if not hundreds, of autism treatments are currently in use. In many cases, there is little or no scientific evidence to support their effectiveness. Parents of children with ASD, driven to help their children and knowing time is of the essence, are unable to wait for answers. They find themselves making all sorts of choices and trying all sorts of remedies, often in the absence of adequate information.

I've never looked at my child, or any other autistic person as an experiment. I've never thought of a certain therapy, medication, etc. as an "experiment." The use of the word "experiment" again makes us look at autism as something scary. You envision a mad scientist doing evil "experiments" in his dark and spooky lab. That's not my life, not my experience.

They admit there's little to NO scientific evidence to support their effectiveness. No one ever dives into this fact, it's something that's simply mentioned here and there. Nothing that important. Well, if I "had" a diagnosis, with which didn't affect my physical health, and certainly wasn't fatal, I wouldn't hop on the bus to try "questionable" treatments. Now, our child takes medication for seizures and G.I. problems--all of which have been studied a ton by real scientists and doctors. That is different, I'm not talking about the conditions that can occur along with autism. I am talking about just the autism itself. I would never allow my child to be a guinea pig, not for autism. If she had a fatal disease, I would, most likely, try any treatment available--even a controversial one! That is a completely different topic here.

Why is "time of the essence?" Why can't we "wait for answers?" There again, they ensue panic. I've spoken to so many parents who look at their child as a ticking time-bomb. "If I don't get intervention or answers or whatever by the time he's 3, it's all over!" That is how so many parents have been told to look at autism. God forbid your child be diagnosed at age 4 or 5, well, it's too late then. Give up on him! This again, is propaganda. Does it appear that the earlier one is diagnosed, loved, and accepted (okay I added those, firm believer here!), they will ultimately do better? Yes, but by no means does it mean you should give up on any child, at any age, because of autism.

In the absence of adequate information: yes, this pretty much sums up all that Autism Speaks, TACA, mercury & biomed folks, do everything. Would we accept that type of uncertainty if we were speaking about a different group of people? If this discussion was regarding deaf or blind persons, would parents make such thoughtless, abrupt decisions? Would anyone, any charity, support this type of careless and rash behavior by people in the medical community?

So many parents have gone through this: researching, agonizing, choosing, evaluating, dropping treatments, adding treatments … trying to find a combination that keeps their child stable, healthy, present, and able to learn and grow. Most would agree that going through this process is a nightmare.

Agonizing...
Nightmare...
Agonizing Nightmare = Autism?
Is that how they really see things? That is sure how it comes off. And, to think, this is not even an ad, a "documentary," or other publication asking you for money. No, this is Autism Speaks and IAN, supposedly reporting on one of their research projects. I'm confused also, about parents "agonizing" and trying to keep their child "stable, healthy, present." As far as autism goes, the terms "stable" and "healthy" have very little involvement. Stability, if you are speaking in terms of psychiatric issues that may be comorbid to one person's autism, is different. But, they make no mention of that. Are they talking about an autistic child who also has bipolar? Yes, there is a need to stabilize this child--but in terms of autism, overall, stabilizing someone just doesn't make sense. It is, again, a fearful word--stabilize is what they do in emergency rooms, during tragedies, etc.

Most autistic people and children I know are relatively healthy. Yes, some have immune-related issues, but again, that is not the autism. Not every autistic has autoimmune issues. So, if you are speaking in generalizations, most autistics are healthy and would not require any medication (above or beyond the average population) to remain healthy. And then, there's the use of the word "present." This is most offensive, and most concerning. If your child is in front of you, aren't they "present?" The word again, leads us to assume, that an autistic person is either always or at least some of the time, not really present or with us. This gives distance between us and them, this makes them again closer to inhuman or something completely different. They are not present. They should not be counted.

"...this process is a nightmare." For who? My life is not a nightmare. Most autistic adults will tell you, the only nightmare they deal with is when they have been institutionalized, put on improper medication, abused, bullied, treated like aliens, disregarded, denied human or civil rights, etc. There is no need to go through this "process" or to "agonize" over it, and feel like you are living a "nightmare." Accept your child, accept that autism is an essential part of your child. Your child cannot be separated from their autism. Love your child, unconditionally. Realize, your child is human, and is present always. Then go forth, and discover what works for your child, what makes them comfortable, be creative, be kind, and be loving.

Parents need answers. Too many have participated, unwillingly, in the great autism treatment experiment.

This last sentence sends chills down my spine. I have a child. I love my child. Anything involving my child, is not done unwillingly. I haven't been forced into parenting. Therefore, anything regarding my child, is simply a part of my life. I may not like it all, but I would never tell people I was forced into this unwillingly. This type of statement is akin to the idea that autism holds a family hostage or has kidnapped your child. More propaganda, more falsehoods.

The average number of simultaneous treatments that children with ASD participating in IAN receive is five, although more than half receive four or fewer. (See Figure 1.) About 5% of children currently receive no treatment at all, while others receive dozens. (The child with the most concurrent treatments is on 56!)

So, after all the fear-mongering in the above paragraphs, they finally present the "startling" information regarding these "treatments." I was expecting to read all about chelation, B12 injections, supplements, etc. But, no, these "treatments" that parents "agonize" over, this "nightmare experiment" that these families are talking about are very basic therapies. In fact, most of the so-called treatments are helpful tools and well-accepted therapies. When I first read this, my first thought was "ugh, I would never make this list!" Well, come to find out now, my daughter has had a lot of these "treatments." I just never looked at it from this point of view. They are simply things that doctors had advised or suggested, and most have been very helpful for my daughter. Here is the list:

Figure 1.

The most common treatments used by IAN families are listed in Table 1. These treatments, taken all together, account for more than 50% of the treatments that families list.

Table 1. Top Individual Treatments Used by IAN Families

Rank Treatment

1 Speech and Language Therapy
2 Occupational Therapy (OT)
3 Applied Behavioral Analysis (ABA)
4 Social Skills Groups
5 Picture Exchange Communication System (PECS)
6 Sensory Integration Therapy
7 Visual Schedules
8 Physical Therapy (PT)
9 Social Stories
10 Casein-free Diet
11 Gluten-free Diet
12 Weighted Blanket or Vest
13 Risperdal
14 Melatonin
15 Probiotics

My child has been in speech therapy since before her first birthday. Back then, it was mostly to help with oral motor dysfunction and feeding difficulties. It's continued, still for those reasons, but also to help with communication now as well. It's all been a positive experience, and she has fun with her speech therapist. My daughter calls her her friend and likes "playing" with her.

My daughter has also been in (& out) of OT from early on, this has helped with her fine motor skills delays and feeding difficulties. We have never sought out an OT who deals solely with autism. We have found, and prefer, therapists who work with a wide variety of patients. For some reason, it seems to us they have better perspective, and a better view of the "big picture." They also don't seem to be attached to stereotypes, or to be selling us on biomed cures.

No ABA for us. For one, we had a brief "encounter" with a milder style, if you will, of ABA. Basically, entice or bribe child into doing something, child screams, blow bubbles or give other such reward. We quickly ended this, a we saw little improvement and felt it was simply wrong! We then read up more on "real" ABA, and were really sickened.

No social groups here, yet, either. Now, we do bring our child to parties, friend's houses, etc. So, you could call those "social skills training," just like every other child partakes in. Yes, my daughter often has difficulty with outing, there are meltdowns, she may opt to remain by herself, but we deal with it. If we have to leave early, so be it. We read social stories, sometimes even make up our own, and these have helped over time. We also make sure we give our daughter plenty of warning prior to the outing, pack her special bag with her favorite things and snacks. We don't force her to be a social butterfly.

We have used and still use PECS. I would never think of this as a "treatment," but more of a helpful tool. Our daughter has PECS picture books, schedule, choice boards, etc. She is verbal, but the visual reminders are helpful, and some days, she prefers using the cards. I think PECS are fabulous and should be encouraged.

Sensory Integration Therapy, again, yes, we use this "treatment" and have since early on. Our daughter was diagnosed with Sensory Processing Disorder at around 10 months old (it was quite obvious and severe). So, sensory integration is more of a part of our life. We see an OT regularly, more for ideas on making our daughter more comfortable with certain situations, etc. This has been so key, and has helped our child feel safer with bath time, grooming, bedtime, etc. We have a lot of "sensory" items in our home, both our kids use them, as they are a lot of fun. They have extremely therapeutic benefits, and help our child immensely.

Our daughter started PT while still in her infancy, as she has always had hypotonia and delayed gross motor skills. She goes in and out of PT, depending on how her strength and stamina are. Again, I can't say it enough--all of her therapies have been done in a very positive, child-led way. For the first couple of months, the PT never even touched my child. She would scream and be upset, so the PT would guide me along each visit, teaching me what exercises to do. As my child became more comfortable, felt safe, and started to have fun in her therapies, she would lead the session. She was able to choose what toys to play with, etc. Her therapists keyed into what our child liked, they'd pick out those toys or borrow them from others, and present them to her at the start of a session. It was and always is fun. The minute my child seems upset or scared, they stop. We hug her, comfort her, etc. If she can't settle down, the session is over. There is no forcing or dog-training going on. All of her therapies were focused on helping our daughter become stronger and feel more comfortable, not make her "normal" or appear to "like all the other kids."

We have never done a special diet. My child does have some dietary restrictions, these are for documented medical reasons.

My child has a weighted blanket, again, this is something I would recommend. I don't necessarily consider this a "treatment" though. Our daughter's blanket is adorable, I will post a link here sometime to the company we ordered it from. This has helped her go to sleep, and sleep longer.

At this point, the medications my child is on are related to physical medical issues.

Our other child is on Melatonin, though...she is not autistic. She has major sleep issues, literally cannot sleep. Melatonin has helped her a lot. I don't consider this a "treatment," simply a natural sleep aid. Again, that my non-autistic child uses!

Probiotics are great, and for a family with GI issues, they have been very helpful. So, again, not an autism treatment to us. Simply something that has helped our physical health issues.

So, let's see...if I was a part of this study, my autistic child has had 7 or more "treatments," and just for good measure, my non-autistic child has had at least 2 "treatments." I think they hype this study up, far too much. Most autistic children I know have never needed all the therapies my child has needed. Again, a lot of her therapies were most likely needed to help with non-autism diagnoses. And, a lot of their "treatments" are better described as "tools to help" And, most of them are far from being autism-specific.

So, what really can one conclude from this information? Very little, when you look at the big picture. If you look at "treatments" and therapies that children with other developmental delays or disabilities use, you would not see much difference. One could then conclude that the difference between having an autistic child compared to a child with any other developmental disability may not really exist. One could most likely draw more similarities than anything else. So, is every parent, raising a child with a developmental disability, in agony? Are they all part of an evil experiment? Are they all living a nightmare? Interesting enough, I've never heard this type of language used with regard to Down Syndrome, Cerebral Palsy, Rett Syndrome, Angelman Syndrome, etc. I wonder then, where is the line that makes life with autism in it, that much dire?

Autism Everyday: Exploitations & Misconceptions (Part III)

"He will never get married."

I'm sorry, but, who is to say this? The child she refers to is around kindergarten age. How can she predict this? I have seen videos of adult autistics from their childhood, and one may have predicted a grim future for them as well. Yet, they are doing SO much in their life. These parents promote the misconception that children with autism do not learn, grow, and change as they get older.

She speaks of seeing a mother dance with her son at a wedding, and how she'll never get to experience that. What parent can guarantee their son is going to get married? I know plenty of adult men and women who are not married, and a lot of them will tell you adamantly, they will never get married. So, what makes her think if her child was NT, that she'd get that dance?

Autism Everyday: Exploitations & Misconceptions (Part II)

"The $50,000.00 that we're in debt...it's all about the autism"

As far as I can tell, the child in this family is under the age of 5. I could be wrong. Either way, let's assume the child was diagnosed with autism around the age of 3. So, in two years or less, you have spent $50,000.00? On what? I'm rather curious as to what that money was spent on. The mother did discuss some special therapy room they built. Interesting, of all the many families I know who have autistic children, a very minute number of them have therapy rooms. The only ones who do, had plenty of money to do so. The rest of us, haven't felt a need for a "therapy" room in our home. Now, for quite a time, we transformed our kids' playroom into a sorta-therapy room. That is, when my daughter's ECI therapists came to the house, we put a few mats down, exercise ball, etc. and that's where her sessions were. Total cost was, I think...oh, right, nothing. Certainly, I would attend to a leaky roof--something that could be not only a safety but also a health hazard, before I went about creating a therapy room.

Aside from the therapy room, I'm still struggling to add the numbers up to $50K. They are in the U.S.A., and if I'm not mistaken, they reside in New York. New York is said to be one of the best states to live in, if your child is autistic (as far as schools, programs, etc.). I assume, if her child has so many issues, that he is getting therapy in addition to a special ed school program. Perhaps they do not have insurance, but then one would have to assume they receive coverage via medicare or medicaid, right? That's typically the way here. So, if they are doing private therapy in addition to what the school district is giving them, I would guess most of that is covered? I'm just trying to think of our healthcare coverage, what is covered, etc. and the experiences of our friends.

I still find it difficult to get to $50,000.00, that is, unless one was also using quack-cures. Perhaps that's where they are blowing their money and getting themselves into debt with? Huh...so it's not really the autism then is it? No, the $50,000.00 that you're in debt--it's all the insane autism fake-cures and biomed b.s. NOT the autism. Again, I may have missed some things here, and perhaps my math is a bit fuzzy, perhaps I'm too ignorant. But, the only way I can imagine getting ourselves into $50,000.00 debt in anyway related to autism is if I bought into the whole DAN!, TACA, etc. mindset, and allowed myself to get ripped off.

Autism Everyday: Exploitations & Misconceptions (Part I)

If you've ever read my blog, you probably know I'm not a big fan of Autism Speaks. But, in case you don't know, I take issue with the "Autism Everyday" video.

It disgusts me the way the children in this video are exploited. I am sick at how careless the filmmakers were and the message this video sends out. I've written previously about Alison Tepper Singer and how she was applauded for her bravery when she admits to contemplating killing her autistic child. That is by far my biggest grievance with the film. Here are some more...

The way the parents force their children to hug or kiss them. The effect of despair that comes from parents repeatedly saying "I love you" and not getting a response. It all comes off as very gut-wrenching. How bewildering it must be to be a parent to an autistic child, and never feel your love reciprocated. Guess what? My daughter can be very affectionate, at times and on her own terms. If a film crew, strangers with strange equipment were in our home, I highly doubt she'd feel much like hugging or kissing me. There is a chance she would cling to me for dear life; but I highly doubt we'd see the sweet and charming child I know her to be, in the calm safety of her home. No, with strangers here, following her every movement, she would have meltdown after meltdown, run and try to hide anywhere, it would be a nightmare for her.

I do not and will not ever force my child to hug or kiss me. For quite some time, the closest we would get to a hug, was an arm that would quickly wrap around our leg and then let go. That later turned into a brief half-hug near our back if we were sitting down. And now, we get full-fledged bear hugs! She will come up to us and squeeze us with all the love in the world! We are careful to ask her if we can get a hug, before we approach her. I am aware of her delicate sensory system. A hug at a certain time, and if she is unprepared for it, may not feel good to her.

Kisses often aren't something my child enjoys. You know what though? I can name you several alternatives to kisses, and they are all just as wonderful. We sometimes touch foreheads, chins, or noses to each other's. Recently, we've discovered our daughter is okay with "lipless" kisses. We press our lips against her cheek or forehead, and she smiles. She now says "no sound!" when she wants this type of kiss. If I forced her to hug on demand or kiss her with my lips puckered, she would pull away. What good would that do?

The majority of times that we say "I love you" to our daughter, we do not get a response. I've yet to cry over this. I won't ever cry over this. I realize that a lot of times, my daughter really doesn't hear us, especially if she is enthralled in an activity, television, etc. So, why would I get upset and take it personally? There's no reason, unless I wanted other parents, people with fat wallets, to feel bad for me and donate to my charity. Another discovery we made was that our daughter likes to sign "I love you." Even though she is verbal, and capable of uttering the words, "I love you," she prefers to sign it. It's a beautiful sight. I'll never demand she answer me when I say "I love you," nor will I want sympathy from others if she doesn't reply.

If these parents would simply throw out the criteria they have for what a sign of love is, be it a hug, kiss, or verbalization, they'd pity themselves much less. They need to quit taking it all so personally. Find alternatives. Meet your child somewhere in the middle, where he or she is comfortable. Doors will open, and I promise you, the new ways you discover to express love, will be even better than the "old" standbys.

"Celebrating Autism" Article

"Celebrating Autism" article on Gather.com

I found this today & wanted to share. I LOVE when I come upon more parents who are celebrating their children. Also, great to hear some of the comments people left. It really gives me hope and it's great to see OUR word getting out. FINALLY!

Katie Wright Speaks Out

Katie Wright on Autism Speaks' Grants

A new post on "Age of Autism" from Katie Wright that I stumbled upon. I found it somewhat interesting to hear what her views & feelings toward Autism Speaks. Nothing earth-shattering, she still hopes AS will start pushing the whole biomedical crap, blame vaccines, etc. etc. But, something that may be worth a read. I for one like to keep Autism Speaks, curebies, and others on my radar screen, you know how the saying goes "...keep your enemies closer."

I can't help it, but I find some pleasure in this big divide that has formed (& is growing!) between the curebie-biomedical-mercury bunch and Autism Speaks. I find it so interesting that all these groups claim to want to "help" children with autism. Yet, together, they've done practically nothing to further the acceptance of autistics, assist teen and adult autistics with regard to career or vocational opportunities, living arrangements, independence, etc. They've done little to nothing to create solutions on changes in schools, the workplace, and in public that would benefit autistics. They have promoted the beliefs that autistics are missing a soul, hopeless, violent, and suffering. It appears that in the end, it will be TACA and Autism Speaks in the ring, fighting one another, parents on either side...and not a single autistic adult benefiting from the millions of dollars each organization blows through.

If you're interested in reading the article, click here.

My Autism Everyday

Where is Lauren Thierry when ya need her?

My daughter has tantrums, some are like any other child her age, most though, are major meltdowns, like you've seen on that film. They've been a fact of life for quite a while for us. I can't tell you the last time I've really spoken to anyone about them. In the beginning, we were dumbfounded and were not sure what was going on. Now, we know, it's simply a part of the whole picture. I don't gripe to our family, friends, or neighbors about them, I'm not looking for sympathy. We have learned to just deal with the meltdowns. My husband and I have our game plan pretty well laid out. We try like hell to avoid them altogether and we try our best to fizzle out the fit when we see it starting. But, most of the time, it is out of all our hands. Then we are on defense. Our daughter's room has had all furniture secured to the wall, and there is nothing heavy she can pull down. That's not to say I'd recommend going in with your guard down--there's no guarantee that a train engine or wooden block won't speed past your head! In general though, we've put the safeguards in place so that she won't get hurt when the world just gets to be too much for her.

She can go to her room, get the rage, confusion, pain, whatever it may be, out of her system. I wait down the hall or at her doorway, making sure she is okay. Some days, she simply needs to cry and work it out. Other times, she will allow me to pick her up and hold her. We will rock together and I hold her close to me, nice and secure. Sometimes, we head to the front porch, where we have rocking chairs, chimes, and a fountain. All of these things have been proven to be a great investment, they really help calm our little one. My heart does ache--for my daughter. I can't imagine how she must feel during these meltdowns.

At home, we just roll with them. When we are out in public, we've also gotten pretty good at managing meltdowns. I will admit, when it's just me, it is a lot tougher. Today was one of those days. We were on a sidewalk, my daughter had already hit me twice and was screaming. She pulled away from me. I had to squeeze my hands with all my might around her wrists to keep a hold of her. Her scream was blood-curdling. My heart was pounding, one slip and I know she'd have taken off. I was able to finally pick her up, although I felt sure any onlookers would think I was kidnapping this thrashing child. This drama continued to unfold as I attempted to get her into our car, and then buckled. She was slapping, kicking, and throwing whatever she could get her hands on. A perfect scene for Autism Everyday, I thought to myself later on.

When we were safely buckled & locked in the car, we headed for the closest drive-thru. She was still screaming, as I placed my order, repeatedly into the speaker. When I arrived at the cashier's window, he asked me how I was. I smiled and said, "well, we've been better," as my daughter continued to yell from the backseat. He warmly smiled back and gently said, "Don't you worry, everything will be alright. It will be alright."

I hold onto simple moments like that--a kind person, saying the perfect words at just the right time. I took comfort in this exchange, a stranger who took the time to say something nice--who says this world is so doomed? Minutes later, everything was alright. My daughter was happily munching on chicken nuggets and happy as can be. When we arrived back home, I set up our Christmas train. My daughter, the screaming, hitting, crying child who had fought me hours earlier, sat next to me. Smiling, she took my hand in hers (something she only has ever done when trying to pull me somewhere) and started rocking side to side. I did the same. She then began to sing, a song never sung before--a whole new carol! There we were, Christmas train circling the tree, my child and I rocking and making beautiful music.

This is what I am remembering and smiling over as I get ready for bed this evening. I have an amazing daughter who held my hand and serenaded me--this life is extraordinary! That wonderful memory is what remains from this day. That is my reality. That is my Autism everyday.