Open letter to Arne Duncan and Barack Obama

Dear Mr. Duncan and President-elect Obama,

I am the mother of a daughter with Asperger’s Syndrome/High Functioning Autism. I’m concerned that the autistic population at the higher end of the spectrum is at risk of slipping through the cracks as we try to educate our growing population of autistic students. This is an injustice to them and to the rest of us.

I’m generalizing a bit here but most individuals with Asperger’s Syndrome are not cut out for the regular classroom. Noise, sights, other sensory issues and social nuances overwhelm them. These things keep autistic individuals from being able to focus and learn. Society suffers by allowing this situation to go on. Why? Because this segment of the autistic population thinks very differently from the rest of us. They are insightful, clever and extremely intelligent and often possess IQs in the superior to genius range. These people can grow up to be our brightest scientists, doctors, researchers and teachers but we have to get them there. I think we are putting too much focus on trying to mainstream these individuals into the student population. In essence, we stunt their growth by trying to make them fit in instead of recognizing that they have differences and are actually superior to the rest of us in some areas. It is time to focus on their strengths instead of their differences, which we label as weaknesses.

I believe the Obama administration will bring positive change to the U.S. and the world. Change is good. Change is necessary. So please, as you look at education and try to think of ways to meet the needs of students with autism, try to see things through their eyes. In fact, ASK them what they need instead of trying to decide for them what you think will work best for them. I feel certain that you’ll be surprised by the responses.

The social group my daughter belongs to is made up of middle and high schoolers with Asperger’s. They don’t want to fit in. They want to be who they are and be allowed to focus on their areas of interest. They want to succeed. They don't want to be cured (just ask them), they want to be understood and respected. Inclusion is not the model for these kids. It can actually be detrimental to them. My daughter once spent 5 hours in a time-out room and ended up standing in her own urine because staff wouldn't open the door until she calmed down. Another time, she was handcuffed at school because she hid, ran and then lashed out when she was forced to come out when she was only looking for escape after becoming overwhelmed. Situations like this happen all the time to kids trying to cope in environments that aren't well suited to their needs. We choose not to dwell on the negatives and instead continue to look for ways to make the system work for us. But I think it’s time to harness great minds like my daughter's and put them to work building our new country instead of forcing them to conform to a system that doesn’t fit their needs.

As a matter of policy, I think that we should look at separating Asperger’s individuals from the regular education population. If we allowed them to focus on their areas of interest/expertise AND at the same time taught them how to integrate into society by direct teaching of social skills, emotion management and sensory needs, these individuals would thrive. Self-esteem wouldn’t suffer, bullying wouldn’t occur and society would benefit in the long run. This line of thinking may go against the current plan that touts the least restrictive environment but it puts the focus on another phrase often used in education, “Individualized Education Plan”. It promotes choosing an education that is appropriate for the individual instead of what is just best for the budget, the school board or the principal.

Individuals with disabilities suffered great injustices in years past and our current system was created to advance the quality of life for these people. There is no doubt that vast improvements were made. When these policies were enacted, however, autism was only found in 1 in 10,000 children. Now that we see it in 1 in 150 children, times and needs are different. We need to step back and re-evaluate the situation and come up with a new plan. Part of the reason the U.S. and the world are in the situation we are in today is because we quit thinking in the long-term. We wanted a quick fix. Well, we’re all realizing the error of our ways and we are waking up. We’re refocusing on everything from environmental choices to economic ones. Education certainly deserves our focus too. Please take a good hard look at the needs of our autistic population and make sure we are doing things today that will serve autistics and society well in the future.

As part of this process, please look at repealing No Child Left Behind because in attempting to not leave anyone behind no one is getting ahead either. Please let education be an area of change we can all be proud of - one that will build our next generation of American leaders who will have respect in the world. The greatest minds in history were different thinkers. Just think how many great minds we are raising right now and what tremendous ideas are waiting to be tapped. They can advance us in ways we can’t even imagine right now.

All the eyes of the world are upon us. Let’s show them what we can do!

Newsweek Article on Autism in Girls

Sorry I haven't posted in a while. I've been tied up with trying to get my business off the ground. I just joined LinkedIn and joined an autism awareness group there. Someone posted a link to a Newsweek article on Autism/Asperger's in Girls. Follow this link to read the article online - http://www.newsweek.com/id/168868/

Barack Obama on Americans with Disabilities

This video doesn't speak about autism in particular but it does give insight into what Obama plans for Americans with Disabilities. To view his stand on autism in particular, go to
www.barackobama.com/issues/disabilities/ and download this flyer on Obama's views on Autism Spectrum Disorders

Traveling with Kids with Autism

With travel season upon us, this article offers great advice for families traveling with their child with autism - be that a girl OR boy. Tips for Travel with Autistic Kids by Eileen Ogintz on SmarterTravel.com

Eileen Suggests:

• Preparation is the best defense. Call ahead and inform the airline, hotel, resort, and cruise line of your child's condition and ask what special accommodations are available.


• Ask if you need a fridge, inside room, etc. Bring your child's own sheets, if you think that will make him or her more comfortable.


• Select an environment your child can handle.


• Talk online with other parents who have been there, done that. Simply Google the destination and "kids with autism" and you likely can connect with a local parents' group.


• Book low season on a cruise or at a resort like Club Med so there will be fewer children and the staff will have more time to devote to yours.


• Travel by car if you think flying will be too difficult. Opt to stay someplace where you can eat some of your meals in your room.


• Be forthright explaining the situation to those you meet.
  Develop stories, complete with pictures, that explain to your child exactly what you will be doing and where you are going.


• Whatever happens, stay calm.
  


• The major theme parks, especially Walt Disney World, are accommodating with front-of-the-line passes for autistic children who find it difficult to wait. SeaWorld and Busch Gardens, also have similar programs.
  

Don't let autism be the excuse for missing out on a great vacation. With a little thoughtful planning and research, your family can join the masses this summer in creating great memories of this year's trip.

Laura Paxton's Personal Story of Autism

Temple Grandin - Reinventing Autism

Sensory Issues and Education in Autism - Temple Grandin

My Experiences with Autism - Temple Grandin, Ph.D.