Advantages to Autism

So one of my son's friends posts on Facebook, "in my opinion Autism is worse than cancer." His friend has PDD-NOS. This friend never had to deal with being non-verbal for his young life like my so did. As a teen, I am guessing this friend also has not watched their grandmother battling breast cancer as we have either.

I told my son, feel free to reply that that you strongly disagree if that is how you feel.

It is how I feel, my so stated in his pragmatic tone of voice.

Furiously he types on his iPhone into Facebook.

Why do you disagree, I ask.

Because there are advantages, he says.

Like what?

He says, I think in pictures. So I can build battle mechs or giant robots in Google sketch up from nothing in less than a week. He smiles to himself.

Plus I rather enjoy echolalia. It's a joy in my life and he laughs to himself. Then starts his internal repertoire that I am sure is his own ongoing comedy skit.

While I type this he finishes his post to Facebook.
He wrote: As a person with autism, while autism comes with disadvantages, it does come with advantages. People just have to find these advantages within themselves. For example, my autism lets me see in pictures and I have used this ability to build giant robots with 3-d modeling software in less than a week.

He had me grammar check it for him. I do so without changing any of his words.

Now he's onto funny posts on the interwebs, laughing to himself.

It is I, the mother, who can't let this go.

Autism is not like cancer. For a person with Autism does not know what their life would be like without autism. If you took it away from them they would not think it was a gift from God as many people with cancer would. A person can lead a normal life and then by struck with cancer. They may even heal. Carry around scars and be stronger for the cancer that came and went. They may have had lasting friendships with no trouble. May have achieved in school, had a career, marriage and family without any strife what so ever.

As a mother I look to the future for my son with uncertainty. My husband and I plan for our son to live with us as long as

His friend posts back: I'm probably the most higher functioning side, but so am I. And yes there are advantages, but you don't have a choice, you take the disadvantages and what advantages that come with it.

What do you want to post back, I say. Do you agree?

Hmm as he eats away part of a baguette: Well I do agree that we don't have a choice in the matter, but we have to work with what we got here.

I battle internally with giving him my thoughts on that matter or letting him tell me more of his.

So are you going post back, I ask.

Humph he says scratching at the gap between the leaf and the wooden table. He checks his Facebook again.

I wonder if I should unfriend his mother. It is difficult to be a child of autism. It is just as difficult to be a mother of a child with autism. I have heard this mother scream and yell at her son that is my son's friend. I have heard her curse his PDD-NOS. I wonder if this boy curses his neurological difference because of his mother or his own actuality.

My son posts: while we don't have a choice in being autistic, we have a choice in making the best with what we've got.

Someone else posted before me, he says. It's really long and he read it aloud to me.

He asks, can I like a strangers post.
Yes, you can even send them a Facebook email and tell them that you saw their post. You have autism too and they might turn out to be a good friend, says I.

I kind of have a rule of not being friends with people on Facebook unless I know them in the real world, he says.

I try to explain about making friends via the Internet and how it can be helpful even if you never meet them in real life. How having autism in a smallish town, he may not get a chance to meet someone who sees having a neurological difference as a good thing. He goes silent.

My mom-ness pops up and I think, he's a good boy. I've bounced onto one his hard and fast rules and there is no way he is going to change his mind. This is an absolute. Yet he loves me too much to argue. The Love and Logic I've used for years is evident in this. Yet, because of the autism, he can't quite voice it. So he moves onto his homework that is next to his breakfast plate. He asks me if the Planet Comicon flier should be recycled or if I want to keep it.

He moves on. This is done for him.

As a mother this is not done for me.
I struggle with whether I want him to be with more people such as himself. I struggle with how others view him. I struggle with when to push against an absolute in his mind and when to leave it alone. Should I have sent him to autism summer camps? More like, should I have forced him to leave home to go stay a week with strangers in a strange place and strange foods where he feels powerless? No, I say to myself. Let him be who he is.

Temple & TED

Temple & TED

Is there anything better than Temple Grandin and TED?  I think it must rank up there with peanut butter and jelly, chill and hot dogs, or macaroni and cheese.  This video was shared by one of my professors.  I watched it and smiled listening to the Temple I have enjoyed many times in the past.  She touched the topics near and dear to my heart

• The different types of the Autistic mind
• The importance of Mentors
• The importance of Social Skills
• The importance of Sensory Issues
• The importance of lighting the spark to science

However, I had taken these Temple talks for granted.  While I have attended workshops and lectures with this charismatic woman, my husband had not.  So, rather than committing two over sites, I thought I would post this here as well.  Maybe some of you have not had the pleasure of hearing Dr. Grandin speak?  Here she is. Enjoy.

Down & Dirty on Data

Down & Dirty on Data

Before I can write an IEP, I need data.
Before I can evaluation an IEP written for my sons, I need to see the data.


Data is the single most important part of special education and yet is somehow the most overlooked.  This is why the first thing I train a new paraprofessional to do is take data.  The paraprofessional can not accurately discuss student behavior if she/he does not know how to observe it or keep track of it.  It is my job to create the forms they use to track behavior.    


Data drives the IEP.
Data drives placement.
Data drives accommodations and modifications.
Data drives the positive behavioral support plan.  The problem is when data is not taken, gathered or observed until a student acts out.


Don't allow dirty data to muck up your program!  Get everyone on the same page!  

A mother's response to Less folic acid in pregnancy tied to autism: study

Less folic acid in pregnancy tied to autism: study

A mother's response

The article that I was linked to from my CEC SmartBrief:  Hartford Courant

The article that I found when I Googled the title: The Chicago Tribune

The actual study when I Googled the article: American Journal of Clinical Nutrition

If you read the newspaper stories and compare it to the actual journal, you will notice the difference in language, tone, and statistics.  As a parent or teacher of children with Autism, it is important to look for the source on any of the media put out on Autism.  Newspapers want to make money. They make money by creating catchy headlines that sell their papers.  They have no need to adhere to a fidelity of reporting of what is actually significant.  A 38% decrease in the likelihood of autism spectrum disorders in the birth of a child is hardly significant to me. What does concern me is the blame on the mother. 

As mothers, we generally do whatever we can to help our children.  I know women who stop eating sushi while pregnant to those who change what they wear, change where they live and only eat organic food while pregnant.  Still I know mothers who put their children on the DAN diet to 'cure' autism.  It is always on the mother.  This pressure the media and culture put on mothers needs to stop.

When I had my own son back in 1993, the current thought was the refrigerator mother idea.   The idea that I did not bond with my child caused his autism was ridiculous. It killed me inside. I did some very crazy things in an effort to 'cure' my son.  I put him through all sorts of faith headings.  Each time it didn't work, I blamed myself.  I did not believe enough.  I did not pay enough.  I was bankrupting my family to put my son through things that did not work.

As a mother I say, "Stop the madness!"  Research what exactly an autism spectrum disorder is.  It is a neurological difference.  Then look at the research as to what has been proven statistically to work with children that have autism spectrum disorders.  Chances are if there is no statistical methodology on the strategy or cure, then it does not work.  Do not trust things that are not transparent. If a strategy or cure tells you that you are not an important part of the process, then it is not effective.  The best strategies either require parental involvement or see parents as resources to create the process.  Never doubt your power in your child's life to help them adapt to the non-autism spectrum disorder world.  Never doubt that you can help.  If any therapist, healer, teacher or doctor tells you differently, run away from them.  Do not give them your money.

If you have a child with an autism spectrum disorder and you worry that your next child will also be on the spectrum, then by all means take the folic acid to decrease your anxiety.  The less anxiety your feel the better no matter what gives that to you.

National Standards Report from the National Autism Center 

I've liked to this document in the past, but I will do it again. This 2009 document is the most concise document to list the current treatments in autism spectrum disorders. I have this document loaded on my iPhone, personal iPod and portable hard drive for easy access.  Every time someone tells me of a treatment for an autism spectrum disorder, I look it up in this document to see it if the treatment is efficient.  

More on Jeremy Sicile-Kira

MTV True Life: I Have Autism

This is the episode that Jeremy was in on MTV.  Follow him around through his high school classes and see first hand what his supports look like.  When a student is paired up to the AAC device that works best for them, it is truly remarkable.  Enjoy!

Valuable Autism Links

Valuable Autism Links

It occurred to me that I haven't shared these links that I use frequently.  Each of these websites have their benefits.  Look through them and decide if they are something you can use.

Ohio's Parent Guide to Autism Spectrum Disorders  This is actually a link to a PDF file that can viewed online or downloaded onto your computer or mobile reading devise. Written by parents for parents, this is very easy to read and comprehend. This guide is relevant even if you do not live in Ohio.  I find it gives parents vocabulary necessary to communicate what they know and need for their child.  This is also good for people who work with people with autism.

Autism Internet Modules This website is for a wealth of knowledge for how to perform the latest pedagogy in working with students with autism in the home and at school.  The modules walk the viewer through how to do the procedures.  There is a pre-test and post-test so it is applicable for paraprofessional, home worker, and teacher trainings.

Autism Spectrum Disorders Handbook through University of South Dakota This is a link to another PDF file that can be viewed online or downloaded onto your computer or mobile reading devise. This is a medically based handbook.  It is interesting to compare the medical view of Autism to the Ohio Parent's guide.  While this handbook may not be the most usable for the parent or worker of a person with autism, it will aid in navigating insurance and medical services for people with autism.

Autism Speaks 100 day kit  This is another PDF file that can be viewed online or downloaded onto your computer or mobile reading devise. This kit is vital to any parent that just had their child diagnosed with autism.  It would also be valuable to a parent who thinks their child might be on the spectrum.

10 Things Every Child with Autism Wish You Knew  I recommend printing this off and giving a copy to everyone that works with your child with autism.  Keep a copy of this on your refrigerator, in your car, on your bathroom mirror, or any other place you need a reminder of how the awesomeness of your child on the spectrum!

Light it up Blue for Autism Awareness

These are the shirts I had made at a local shop that matches my bumper sticker. We all plan on wearing our shirts on Monday, April 2nd, 2012.  I encourage you to wear blue for autism awareness as well!