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 :

http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

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 :
http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html

Diary of a Mom :
http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/

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
http://autisticadvocacy.org/

The National Autism Society
http://www.autism-society.org/‎

puzzles sadness and disappointment

Well today came a day I was hoping wouldn't come. By enrolling my child in a day care that specializes in special needs children and stresses inclusion and intermixing of nt and non nt children (nt= neurotypical) I had hoped that my sons challenging behavior would be worked around instead of excluding him from things. I was wrong.

Today was the big weekly field trip. They were going to a local-ish train yard for a ride. A was very excited as trains are his thing. ANY train floats his boat. They arrived there too late to ride the train so they opted to go to another attraction local to the yard. While at the other place A had issues listening, staying with the adults (he is a bit of a bolter , but this is nothing new, they KNEW this, its in his IEP they helped draft) and while on the way back to the center he opened his door that had not had the child locks activated on it scaring the driver. A never rides in my car without the locks activated so he really isn't used to the latch actually opening his door. But because of all this A has been un invited to the swim trip tomorrow to a local lake. We're in the northeast so you can imagine how hot it is right now , upper 90s and the dew point in the 70s makes for VERY uncomfortable weather. Add to that my last post where I mentioned just how much A loved swimming last week and you can imagine how upset I am about this. I was ciounting on the trip to help keep A cool since the heat only makes things much worse behavior wise for him.

I understand they are concerned for his safety BUT A has autism. They are supposed to be inclusive and trained to handle kids like him. They know him. This summer program is run to provide ESY (extended school year) services over the summer to kids making the transition to school from pre-school. I watched the school system exclude N from too many things due to his quirks before I knew what his diagnosis was and that exclusion was inappropriate. This incident with A just brings back all of that. I'm hoping this is a one time only thing because if they start excluding A from more trips that are being done as part of the ESY program with the school district I'm going to file a complaint with the school district about this. Exclusion is not an ongoing solution to the issue and the school isnt paying for him to not be included in the program.

I thought school and the teachers were supposed to mold themselves and their teaching style to make a place for each kid in their institution of learning? Not that the kid was to be bent, molded, changed to fit the teachers mode of teaching. My child is a puzzle piece and you cant change the piece's shape to fit the puzzle , you have to find the right place/orientation, etc for the piece.

There has to be a place or a program to fit our puzzle pieces... the problem is I cant seem to find it. Which really makes me sad and disappointed in society.

School is out, schools in

Well minor miracle happened in our town last month, N passed all his classes for the year. No summer school for him. A has started with his ESY (extended school year) program and is having a blast. N is starting to line up volunteering opportunities to keep him busy this summer(jobs are scarce in our area for teens with so many adults out of work, even the NT kids are having a hard time). Life I have to admit is far less stressful in the summer as I'm not fighting with N to do his work and picking up the pieces when the challenges of being an Aspie get to be too much or the local inbreeds bully him too much.

A is starting his medication trials this week. A has ADHD in addition to his autism and I'd rather try all the meds with a one month trial and get that out of the way than listen to years of the school going, Have you tried medication?. A quick yes we tried all the 3 major medications with no effect tends to shut them up pretty quickly. Were starting with Adderall and then next month we'll move on to Ritalin and then straterra. N had a horrible time on Wellbutrin with new and hard to handle behavioral issues while on it so we wont be trying that one with A. And that's pretty much the all the first line drugs used for ADHD. If they don't work I'm not prepared with a kindergartner to try 2nd line drugs with their more numerous side effects.

And on the behavioral/sensory front A has had a great June. He got his hair cut and didn't cry or flinch much while Dad was using the clippers on him. That was a first! and This week during his ESY program they took them swimming and he went in up to his chin (scared the adults a bit with his bravery) and even when he slipped and went under briefly he didnt get upset or not want to go back into the water! A officially likes swimming! so We're going to try the local swimming hole this holiday weekend. Its a resident only location so hopefully it wont be too crowded with riff raff.

I hope you all have a happy 4th of July this weekend and wish us luck as we try to conquer another sensory issue, the fireworks.

One chapter has ended and another begins ....

Well A graduated preschool on Friday. Such a bag of mixed emotions. Sad that the little baby is really well and truly gone in the past. Happy that he has passed this milestone and is really ready for kindergarten and disappointed that when standing next to the other mostly NT (neurotypical) kids he really shows how different he is from them. As a parent you just want to make things better. Unfortunately you cant make autism better no matter how much effort or medicine or therapy you do. All you can do it work to give them coping techniques. And when things are more than usual, more noisy, more chaotic, etc, those techniques fail.

Fortunately his preschool actually specializes in kids with disabilities so when his coping techniques failed during the ceremony they handled it with grace, unlike another preschool in the area who failed miserably in regular situations with A that I hate to think what they would have done during the ceremony if he was still going there. He only went there 4 weeks before we were summarily "fired". Even though the school system was paying for their services they didn't bother to tell them until after my "lovely" confrontational interview in which I was told how horrible my child was and that they couldn't reasonably do what they had been hired to do, educate him and provide a setting for his therapy at school district expense. I get my "revenge" every year when same daycare asks for $$ from the town to help fund their programs. I and my husband vote no and let everyone we know, know why we vote no. They didn't get their money this year and for that we did a happy dance.

But now we play the waiting game with A. There is a new kindergarten being set up locally that would be perfect for A. A full day program (public school is only 2.5 hours) ,very small class size (under 10), 50/50 mix of NT and non NT kids and lots of adult support in the classroom to help the kiddos including an MD to help them on their social skills. But they haven't been rubber stamped by the state yet to be an official kindergarten so the school system cant make arrangements for placement there yet instead of the regular school. The program has been certified but as we all know govt rubber stamping can take a while and September will be here faster than we can imagine. So holding our breath and crossing all our toes and fingers for the moment seems to be the plan.

I dread A going to the regular school system either this coming year or the year after. He looks like N so much that I'm afraid bias will be preset for him. I've already run into teachers at the school who have commented on how much they look alike. N didn't get diagnosed on the spectrum until he was 10, and the school didn't acknowledge the diagnosis until he was 13 so he had a very rough elementary school experience. I dread to think what will happen when these same "professionals" ( when a teacher actually laughs at a student and not in a nice way they have lost any respect I have for them) have my younger and much more disabled son in their classrooms and think because they look alike they are the same.

My 2 children are very different and its not just their level of disability. N is lazy (something the school actually helped to teach him by just passing him along to the next grade instead of making him complete things) where as A is very willing to work to learn. N didn't have speech difficulties and A has verbal apraxia. N wasn't reading when he entered kindergarten, A is reading and doing mental addition and subtraction and can tell time like no other. In someways I think A is actually smarter than his brother, and N tested just under Mensa qualified at age 7 so he's no dummy either. With A's sensitivity to sound and light a full school with hundreds of screaming kids at lunch , recess and dismissal time will be beyond challenging for him and I have real fears that the school will be less than understanding.

And so I wait and hope that at least for this coming school year A will be placed in the progressive and proactive new kindergarten and pray that I will be able to negotiate a safe passage through the public schools when that times comes for A. N on the other hand I'm just hoping that he passes all his classes this year as I sit and keep prompting him every 10 minutes to write his end of the year joint English and world cultures paper/project.

In the beginning

Im the mom of two boys on the spectrum. My eldest N who is a teenager has aspergers. My youngest A has "regular" autism and will just be going to kindergarten this fall and both have adhd. This blog is my way of a) sharing what raising children on the spectrum is like because I can say from experience that raising autistic children is an isolating experience at times and nothing seems to help mentally more than knowing someone else has gone through what you are and b) therapy for me because there are things I need to say and sometimes telling family doesn't have the same therapeutic effect as telling others who aren't there everyday.