Asperger's Programs in Public Schools

The county I live in is supposed to be have one of the best Public School systems in the country. However, when it comes to providing a consistent, appropriate education for children with high functioning autism / Asperger's syndrome, they are failing miserably. There was a Special Education Advisory Committee meeting last night where the main topic was whether or not an Asperger's program was needed at the high school level. I don't understand how there can be any question.

I was blown away when the Director of Special Education Services said that there wasn't enough demand for the program. We all know that autism rates are going through the roof all over the country. Our county is no different. What is different is that even though there are very successful Asperger's programs available for both Elementary and Middle Schools, very few people know they exist, and the IEP meetings seem designed to keep kids out of these programs.

I was also shocked with the complacency regarding student failure. I don't understand why a student has to fail multiple times in their current placement before anyone would consider finding one that work better.

The easy explanation is that every child on the autism spectrum is different, with widely different challenges and support needs. While this is true, I believe that an educational team (teachers, paraeducators, and therapists) that is trained in working with children with autism has the highest chance of success. Trained professionals working with children who all have a similar disability can make a huge impact. This is clearly demonstrated in the few programs designed for children on the high end of the spectrum. Those parents who have children in an existing Asperger's program were generally happy with the education their children are getting, and were worried what would happen to their children when they reached high school. To simply give up on providing a consistent educational experience because it is difficult is beyond irresponsible.

When Michael was evaluated for his official disability code, the school psychologist told us she was on the fence between a diagnosis of High Functioning Autism and Asperger's Syndrome. She told us that there wasn't much difference between the two diagnoses, and that it wouldn't affect his coding/educational opportunities. Apparently, she was wrong. Because she decided to go with the autism diagnosis, the school wouldn't even discuss the possibility of Michael going into the Asperger's program. So, he's stuck in a learning center that is designed for students with many different diagnoses, where most students are not able to keep up with the standard curriculum.

Even though Michael is extremely bright, he is essentially failing this year. When he finished Kindergarten, he was reading at a level 11. At the end of the first quarter this year, he is reading at a level 10. Going backwards is not a good thing. Additionally, his report card states that he has 'minimal understanding' for every topic under Writing and Language. He has gone from 'complete understanding' in 75% of the Math categories in Kindergarten to 50% of the first grade. Again, going backwards.

When we discussed his lack of progress at the parent-teacher conference, his teacher indicated that Michael's behavior is getting in the way of obtaining information from him. He has trouble getting the words to answer questions and is easily overwhelmed, especially in writing assignments. Even though she has tried to implement strategies and accommodations from his IEP, results have been sporadic at best. She was going to ask for an autism consult to see if an autism expert could help. We haven't heard anything back yet.

I am very frustrated because I know that Michael can produce the information needed to pass his evaluations. When I sit with him to do his homework, he can do it. If I know that the main focus of the assignment is reading comprehension, I offer to scribe for him. Last night, he read a poem followed by three questions. When I asked him to tell me the answers, rather than to try to write them, I got the correct answers almost immediately. Yes, he has huge focus issues, but he can do the work; he does understand what he reads.

I don't want to be overly harsh to his teacher and the paraeducator. They are doing the best they can with the resources available. They are both extremely caring professionals who obvious like Michael and want him to succeed. The problem is that he has complex needs, and is not in an appropriate setting to address those needs.

So, where do we go from here? I honestly don't know what the options are, and what steps are in his best interests. We will probably look into getting private testing done to see what his best educational diagnosis is, but that is expensive and money is extremely tight at the moment. Anyone have good advice? If so, please leave a comment!

Thank you, Congressman Van Hollen

I'm not usually a political person - I'm registered independent, and I vote on issues rather than party lines. But, in the last few months, I've really been drawn into the issue of the vaccine-autism controversy. Like many parents, I watched my son slip away after a series of shots, culminating with the flu shot. I thought I had done my research, that mercury was out of all childhood vaccines. And, I listened to the advice of our pediatrician. Now, I know a lot more and my son hasn't had any shots since his diagnosis.

I was happy to see the announcement on Age of Autism that there would be a Congressional Briefing with updates and new information. I had naively assumed that my representatives would be eager to send staff to the briefing; that they wanted to know all the issues - not just the propaganda put out by big pharma. I sent an email to Congressman Van Hollen and Senators Cardin and Mikulski. The only response I got was a form letter from Senator Cardin saying that he supported the Combating Autism Act. Not quite what I had expected.

I decided that if emails weren't answered, that they would respond better to a phone call. I was pleasantly surprised when my first call, to Congressman Van Hollen's office, was received warmly with assurances that a staffer was already scheduled to attend. I was less impressed when my call to Senator Mikulski's office only responded by saying that a health staffer would 'try' to attend. But, at least I got an answer on my first call. It took me at least 4 calls to Senator Cardin's office before a scheduler finally called me back. She told me that a staffer would attend the briefing.

The day of the briefing I was hopeful that all my elected officials would be represented. When the list of attendees was published, I was disappointed to see that only Congressman Van Hollen had actually been represented at the briefing. Neither Senator had actually sent anyone, despite the phone calls and email.

So, I want to say thank you to Congressman Van Hollen for responding, and for getting both sides of the issue. I'd also like to thank Representative Maloney for hosting the briefing. Finally, I'd challenge Senators Cardin and Mikulski at least read the transcripts of the briefing.

Welcome to my life!

I've been reading and enjoying a number of blogs for a while now, and figured it was time to set one up. Please bear with me as I'm pretty new to all of this. I have a pretty full life so I'm not sure how often I'll be posting, but I figure this will be a great learning experience.

Autism
I have a six year old son with high functioning autism. My world revolves around him and his recovery. Due to multiple food allergies and sensitivites, he is gluten/casein/soy/egg/peanut free. We struggle every day, and have small victories every day. Life is never boring!

Healing
We follow the DAN! protocol and have seen tremendous progress with it. When we first started, my son was barely 2 years old, and considered to be 'moderately' autistic. We went to Kennedy Kreiger for the diagnosis and they were a complete waste of time and money. Basically, they told us "I'm sorry, your son has autism. Good Luck, Good Bye." From the time we walked out of their office, we have been researching every treatement out there, and trying the ones we think are reasonable. We are lucky enough to work with two wonderful professionals who guide us through the treatment maze.

Hope
I went to an early intervention conference a few years ago now. The one thing I remember was the response of one parent who was told she was 'in denial' about her son's prognosis. Her response: "No, I'm in Hope". We have embraced that concept and made it our family mantra. We will do everything we can to heal our son, and hope and pray every day. It's working, and life is good (most days).

My Other Life
My day job is to develop applications using Lotus Notes/Domino. I love what I do, and my job keeps me grounded in the 'real world'. Plus, the company I work for has a fantastic work/life balance program. I'm very lucky!