Tuesday, December 31, 2013

Why I boycott Autism speaks and you should too

There is a hash tag on twitter now called #boycottautismspeaks . Those behind it have organized twitter marches against autism speaks and bombarded thier corporate sponsors requesting they stop supporting Autism Speaks. They have the support of those on the spectrum and thier family and friends. They have my support and this is why.

I have a dream for my 2 sons with Autism. That dream is a pretty common one for most parents. I want them to live independent lives with fulfilling jobs that they can support themselves with. I want them to have friends and be happy. Every dollar that is donated to Autism Speaks to further their goals infinitely hurts them. Every penny makes it that much harder for them to achieve that pretty reasonable goal of being happy and self supporting.

This is why.

Recently the Co-Founder of Autism Speaks wrote and published this op-ed :


In it she states :

"Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse.
These families are not living.
They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely - 24/7.
This is autism.
Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.  
This is autism.

In 2009 her foundation put a spot on TV entitled "I am autism" that stated this :

"I am autism. I’m visible in your children. But if I can help it, I am invisible to you until it’s too late. I know where you live. And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources and I relish their desperation. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering, “Who will take care of my child after I die?” And the truth is, I’m still winning. And you’re scared. And you should be. I am autism. You ignored me. That was a mistake." 

If you listen to Autism Speaks you think anyone with an autism spectrum disorder (ASD) is a home wrecking, bankrupting, physically dangerous individual.

Now do you want to be friends with a monster who wrecks marriages, bankrupts families and might hurt themselves or others without warning? Do you want to hire or work with someone like this? Rent an apartment to one? Live next door to one? Have your children play with one? Let you son or daughter marry one?

Chances are if you are honest with yourself the answer is no.

How is an organization that puports to advocate for those with ASD and actually met with washington leaders to formulate a plan for the adults with ASD helping with any of that if they constantly paint the very people they claim to help as monsters?

How can they advocate for acceptance  and inclusion when all they do is encourage isolation by making the public fear those with ASD?

The honest truth is they cant. The honest truth is Suzanne Wright wants to eliminate all with ASD. She has stated she wants the term autism to be a historical term only. That is the goal of autism speaks. To eliminate the Albert Einsteins, Daryl Hannah, Dan Ackroyds, Susan Boyles, Temple Grandins and Steve Jobs of the world. I dont know about you but that's not a place I want to live in.

Autism speaks only spends $$ on themselves, fear mongering and research to eliminate autism. They dont help people already affected by ASD. They do not help fund supports in local communities. They do not help people with ASD at all.

This is why I #boycottAutismSpeaks and you should too. But if you need more reasons read why these people also do not support Autism Speaks. One is a former advisor to them and the other a well known advocate who actually met Suzanne and details in this link how Suzanne doesn't even understand those with autism even though she claims to have a grandchild affected by it.

John Elder Robinson :

Diary of a Mom :

Autism is a spectrum like the rainbow. The only correct course of action is to support those with ASD and make a place for ALL of them at the table of life. Life is more colorful and amazing when you do. There are far more colors on the autism spectrum than just blue.

If you are looking for an organization that truly does support those with ASD and is working towards providing supports and acceptance of those with autism I would recommend :

The Autism Self advocacy Network

The National Autism Society

Saturday, April 28, 2012

True Autism Acceptance starts at the doctors office.

Autism Acceptance,

This being the end of autism awareness month I though this might be an appropriate time to post something I've been thinking about for a while.

April is when we as the autism community come together and ask the non autism community to learn about autism ,be aware of autism and learn to accept that autism is part of the world. But what level of acceptance are we looking to achieve? What level of acceptance are we, the ones who live with it everyday, ready to accept?

We accept our loved ones diagnosis, that's a given. We accept that others have it too. We accept that currently there is no truly known cause and no known cure or cure like treatment to eradicate the symptoms of autism. But do even we truly accept autism?

If you go to the doctor and he runs some tests and looks at the results of the first few tests back and says to you I think you might have cancer we accept that and move on. He doesn't say I think you have cancer but let me run a lot more tests to be 1000% sure because we dont want to label you as having cancer until we are sure because the label will follow you forever and ruin your life if we are wrong about what you have. No we say okay doc, lets start treatment for cancer and if it ends up being wrong we'll change the diagnosis and move on to a different treatment.Why the perceived shame in an autism working or final diagnosis among medical professionals?

Autism is a medical diagnosis. We should start treating it like a medical condition. No better and no worse than any other condition out there such as asthma, allergies, high blood pressure, etc. We need to bring the same level of acceptance to society in general. All medical conditions require treatment and life style adjustment to accommodate the condition.

Its been proven time and again that the earlier treatment starts the better the final outcome in autism. Kids who get intensive therapy very early on in life do FAR better than those who get help later.  Doctors need to start using working diagnosis of autism to start treatment before they come up with a final diagnosis which often has to wait until a team of professionals do a ream of tests and then deliberate on the results for a while. Even in the best of situations that means our children loose 2-3 months of treatment when their brains are the most flexible and fluid and able to make the most of the therapy treatments. For most of us that really translates to 6-12 months lost and that is not what should be happening. There are no negative side effect of autism therapy for those who actually dont have the condition so there is no risk of harm to the patient to start treatment NOW and wait for the final diagnosis.
Our medical professionals need to start treating autism like any other condition. No more shame in the diagnosis. If the rate of autism is now 1 in 88 and 1 in 54 boys we need to bring autism out of the medical "closet" and accept its here to stay and just like any other medical condition it needs to be treated openly and with respect. Once we no longer have any shame attached to the actual diagnosis then we can work on acceptance of those with the condition in daily life.

Saturday, March 3, 2012

Autism Awareness

This is in response to many posts I have seen about Autism awareness and other issues within the autism community.

Currently it seems there are 2 very different camps in autism and they do not work together for the community as a whole.

One camp is the very high functioning or aspergers parents who a) who want acceptance for their children who are almost neurotypical and present their children as the only face of autism and b) think the idea of a cure is a threat to their children's existence and uniqueness. They are the ones who blast the idea of a cure and push for people first language, ie My child has autism, its not who they are. Their children are not autistic, they have autism, like others might have a cold. They want their children accepted as the new version of normal and for others to not see autism as a disability but another ability.

The other camp is the parents of children FAR more disabled by autism. They look for cures in very unlikely places and often are looking for somewhere to place the blame for their child's condition. They also seem to only allow you to join their camp if you win a contest of my child is more disabled than yours. If your child is too verbal or goes to regular school then you cant possibly know what its "really" like to raise a child with autism. If your child is high functioning then they dont really have autism and are just looking for free ssdi or other benefits.

I would love to see a third camp arise out of the ashes of both other camps. Our child have autism. They are autistic. All of us have difficulties and challenges raising our children. We need to start acceptance at home within the autism community. Accept that all parents of children with autism face huge challenges and difficulties. Accept that what works for one family doesn't work for all.

Our children deserve to have research done into autism so that the OPTION of a cure is variable. Do I think all children should be cured upon diagnosis? No. That's not appropriate. I doubt the cure if its ever found will be without risk or side effects. The end result HAS to out weight the possible negative effects it will have on the individual. But the chance should be there to remove the truly debilitating and negative aspects of autism. All of our children should have the chance for an independent fulfilling life. Without a cure or far more effective treatment options that is not possible for far too many of our children with autism currently.

Our children deserve to have the level of awareness and understanding of their condition raised to the point that we are not fighting with schools and other programs or society for inclusion and support every day of our children's lives. The level of awareness and understanding should be high enough we do not feel compelled to live our lives in the shadow to avoid the judgmental and hateful looks, comments, actions, etc of society in general. Society should be aware enough to offer services to our community like sensory friendly films EVERYWHERE because its the right thing to do.

That is the awareness I fight for. I have been blessed to have 2 high functioning children on this autism journey. I do not forget for one second that many are not that fortunate. While I do not think my eldest with aspergers would want to be "cured" I'm sure he would love to not be so physically sensitive to touch. While my youngest may not need a cure as he is very high functioning autism I think he would love to not have the verbal apraxia he fights everyday just to express himself and to interact with the world he lives in. He would love to not have most alarm bells or a person shouting in the same room cause him physical pain. Both would love to have far more friends than they do because of the social effects of autism. And research along the way to a cure could provide answers to remove the negative benefits of autism for those who choose.

But we are all on the same journey and there are no separate levels of passengers on this ship (first class, steerage, etc). We are all parents or people affected by autism. No one person's challenges with autism should be denigrated because they are not the same as yours and are perceived to be less than anyone else's. We as the community most affected by autism should work together to achieve this one goal for our children, Awareness that they have a disability, Understanding by society as a whole of what that disability encompasses and Acceptance of our children into general society without reservation.

To achieve this goal we need to work together to educate society in general and our own autism community what the face of autism looks like by showing as many faces as possible from all levels of the spectrum. Now is the time to stop hiding in the shadows and hiding our children's disability like we are ashamed of it. Force society to remove the "shame" of autism and welcome our children into it.

We need to work together to dictate what accommodations should be required for our children to go out in society much like the requirements for the physically disabled (ramps, elevators, door widths, etc). Do we want all elementary students to be offered an 1:1 aide and ABA therapy if they are diagnosed with autism? Do we want homework accommodations mandated? Do we want noise volumes and light levels regulated in the classrooms and other public spaces? Do we want teachers,other educators, police , fire and other first responders required to have general training in autism, and how to handle meltdowns and other outbursts, etc? This is more important than research into why or cures. Its obvious that autism is extremely complex and will take years or decades to truly understand the biological workings of it before we can think of truly effective treatments or even a cure. In that time thousands of our children will age out of the safety nets in place during the school years. They need our action now not decades later.

In the end it may require a cure of some kind to be researched and found to ultimately provide the best level of accommodation for some of our children. We as the autism community have the opportunity through education of society to shape what that cure looks like and whom it is offered to. We as the community affected by autism have the opportunity to define autism to ensure none of our children are excluded from needed services. Any parent who honestly says they wouldn't change any aspect of their child with autism if given a chance either isn't being honest with themselves or their child doesn't have autism. Otherwise why would we fight for therapy services and accommodations on their IEPs? Honestly not everything with autism is champagne and roses.

But regardless of any cure now or in the future we are a large community. One that adds a new member every minute of the day and its time to join together.To accept each other as members of this community without judgement as to our worthiness to belong. We need to make autism deniers like holocaust deniers unacceptable. Autism is real and our children have it. Society must make a place for our children because there are far too many of them to hide any more. And we in the community need to work together to achieve our goals and create a better life for our children. Its time to join the camps and stop the in fighting and judgement of each other, for our children because that is why we are all here.

Tuesday, March 15, 2011

We could all use a little of that Charlie Sheen drug sometimes

I was at the local school budget meeting last week in my hometown. Its a small town only about 15k people between 6 towns in a 40 mile area with about 10k in my town, the biggest. but even in a close knit small new England town there exist close mindedness on a scale unbelievable. Mom-nos who doesn't live near me even heard about it. She posts about it here, http://www.hopefulparents.org/blog/2011/3/11/when-the-political-is-personal.html .

she puts it more eloquently than I can. She also doesn't live here and so has not had to spend the last week trying to find her happy place so that the lesson she teaches her children is not how to fillet an asshole but instead how to proactively and civilly achieve political change.

Monday, March 7, 2011

Words of Wisdom from one on the spectrum

if you judge a fish by its ability to climb a tree,... it will live its whole life believing that it is stupid.
— Albert Einstein

Tuesday, February 1, 2011

back to normal

Its been a while since my last post. Life at times seems to hit the fast forward button and before you know it months have passed. Life with kids is never boring and life with 2 on the spectrum is even less so. Between birthdays, doctor appointments, IEP meetings and just life in general I never seem to have a moment to sit down and write. I'm hoping this year will be different and I will be able to post far more often than I have in the past.

Since I last posted somethings have changed alot.

My Eldest FINALLY has an IEP. You wouldn't think with a note from his specialist that he has adhd and aspergers that it would take 4 years to get one but in his school district it does. The funny thing is he got it for his ADHD diagnosis not his Aspergers. And yet its his aspergers that causes the most problems at home, not his ADHD. It doesn't really matter to me what they put on the paper just as long as he gets the services he needs. So for the first time in a very very long time he actually has a b average in school. When I look at his report card I kinda start to see the light at the end of the tunnel that represents him living independently.

He also turned 16 this last year so I now look forward to teaching him to drive this summer. When you tend to get overloaded with external stimuli the thought of putting a 2 thousand pound death causing machine in your hands is a scary proposition. I think this is going to be a slow process and Mom will need regular self medication at Friendlies with forbidden chocolate ice cream. and wine at home after wards.....

My youngest is now in kindergarten. We lucked out, he is in the best kindergarten class we could hope for in our local area. A mixed inclusive class that this year has 5 students in it with a teacher with 2 in class aides. a 1:2 ratio is a wonderful thing. He is loving class and I say with some pride is the smartest kid in the class. He is reading at a 2nd grade level and doing math at a similar level. The teacher has commented that its really hard to call on him in class because he is so far ahead in those areas that he tends to make the other kids feel bad that they cant catch on so quick. She does a really good job of challenging him without rubbing his brains in their faces. So this year has been a time to really work on his other areas such as social skills and get lots of time working on his motor skills and such. Next year as he transitions back into a regular classroom will be a challenge. The school system tends to like the one size fits all approach to lesson planning and "teaching" him 1st grade math and reading when he is so much farther ahead of that will only lead to trouble. A bored kid is a kid causing trouble. a Genius level IQ bored kid is a super villain in the making.... Dr Doom must have been bored a lot in school as a kid.

He has a new obsession though. He loves the game of monopoly. He plays the board version (when we have the time), a version on his computer and another version on the old game cube we have. And when none of those 3 options are open he makes boards with his legos and plays that way with himself *g*. At least its a break from Thomas and friends all day.

So life is pretty much back to normal around here,what ever normal is...

Tuesday, July 13, 2010

Just a thought for today -

Autism awareness starts by recognizing that you probably know or are related to someone with autism. Take a look around you. There is probably someone you know or many someones who are on the spectrum. What can you do to assist or accept them? If everyone gave just a little bit of time to a person on the spectrum to assist them or to help them be accepted for who they are life would be that much easier and happier for those on the spectrum and their loved ones.

We're not asking for everything on a silver platter, just a moment a day. Stop a person with ASD from being bullied, don't look at the parent of a child having a meltdown due to being over stimmed like a strange alien from another planet that needs to leave, acknowledge that those on the spectrum have a right to exist and can contribute to society. Volunteer, walk in a fund raiser, etc. Just a moment a day from everyone can make a lifetime of happiness for so many.