Tuesday, August 19, 2008

dear in-service lady,

You seem very nice and extra bubbly. You also seem like you are quite smart, inuitive with children, and overall a fantastic person. I enjoyed your presentation today about autism and behavior intervention.

And* I think you are missing the boat just a smidge.

You see, you kind of glossed over the causes of autism by reciting a bulleted list that included genetics, heavy metals, vaccines, preservatives, and other environmental factors.

I feel frustrated when broad discussions about autism leave out the Fragile X factor.** It's not because I want my disorder to win or because I want all the attention. (I do love me some positive attention, though.) It's not because I want to be all "woe is me." It's because children and their parents deserve an accurate diagnosis. And these are the reasons why:
  1. Their siblings need to be tested
  2. Their parents need to plan
  3. Their parents may need to address FXTAS and POI
  4. FXers learn in pretty much the opposite way that autistic children do
  5. FX carries with it a label of mental retardation or other learning disabilities that autism may not

We need to understand the children and adults we work with as much as possible in order to help them be as happy and successful as possible.

Here's the word from the people who know best, The National Fragile X Foundation:

Fragile X syndrome can cause a child to have autism or an Autism Spectrum
Disorder (ASD), though not all children with fragile X syndrome have autism or
an ASD.

FACT: For between 2% and 6% of all children diagnosed with autism, the cause
is the Fragile X gene mutation. (This may not seem very high, but consider that the CDC now reports that 1 in 150 have autism. Two to six percent of 1 in 150 is a sizable number of people.)

FACT: Approximately one-third of all children diagnosed with Fragile X
syndrome also have some degree of autism.

FACT: Fragile X syndrome is the most common known single gene cause of
autism.

If your child is diagnosed with autism, or an autism spectrum disorder (ASD),
please ask the doctor to rule out fragile X syndrome by ordering the DNA blood
test for Fragile X. http://www.fragilex.org/html/testing.htm

If your child is diagnosed with fragile X syndrome, and you believe your
child also has autism or an Autism Spectrum Disorder, please consult with your
child's doctor and ask that he or she be evaluated for autism or an ASD.

To learn more about the relationship between Fragile X and autism please
click here: http://www.fragilex.org/html/autism.htm or
call the National Fragile X Foundation at 1-800-688-8765.

From Dr. Randi Hagerman's statement to the United States House of Representatives Subcommittee on Health and Environment: "...Fragile X represents a portal through which we hope to view and treat a wide variety of other disorders of brain development and function. All children with autism...should be tested for Fragile X."

Please include the thousands of us who are affected by Fragile X in your large scale conversations about awareness. I will try more to include you in mine. Please continue to be a positive advocate for special needs children. I LOVE the way you focused your intervention on the changes adults need to make in order to gently teach young people appropriate functional behaviors.***

Also, your kid looks super cute,

the other lion

*I learned in our in-service yesterday that when having important conversations and when using "I Messages," it is a good idea to substitute the word 'and' for the word 'but' to ensure that each person's individual truth is maintained. If I say the word 'but', I may infer to you that your truth is in fact invalid. I'm sure my preschoolers will pick up on the change.

**Check out my first class "I Message."

***Let me know if you want details on this. It basically talked about how all behaviors are an attempt to communicate and that a caregivers response either reinforces or eliminates said behavior.

6 comments:

Anonymous said...

I hope you send her this message. You say it well.
Love ya
Mom

Liz Ditz said...

I apologize for the topic hijack, but I want to publicize this to as many autism parents as possible.

Please publicize to autism parents: government agency seeking public input

Please feel free to forward this to any person you think would be interested.

More information at

http://neurodiversity.com/weblog/article/171/

======
On September 15, 2008, members of the Services Subcommittee will meet to review all public comments submitted to date, and will present these comments at the next meeting of the full Interagency Autism Coordinating Committee, which is scheduled for November 21, 2008. Members of the public are invited to participate in the September 15 Services Subcommittee meeting by conference call; for more information, please consult the public notice posted on the U.S. Government Printing Office website.

=======

Request for Information: Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders
Notice Number: NOT-MH-08-016
Key Dates:

Release Date: August 11, 2008
Response Date: September 19, 2008
Issued by: National Institute of Mental Health (NIMH)
Description

The purpose of this Request for Information (RFI) is to seek input from Autism Spectrum Disorders (ASD) stakeholders including individuals with ASD and their families, autism advocates, State officials, scientists, health professionals, therapists, educators, and the public at large about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.
Background

The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and, among other duties, requires that the IACC develop a strategic plan for ASD research. The IACC includes both members who are active in the area of ASD research funding, services, or advocacy, including several members who have family members with ASD, and one member with ASD. In March of 2008 the IACC established the Services Subcommittee, to assess and improve services and supports for people with ASD and their families. A previous IACC developed an ASD Services Roadmap, which is available on the IACC Website above. This RFI is a next step to obtain updated information about present and future services and supports to individuals with ASD, and their families across the lifespan.
Information Requested

The IACC is interested in receiving your input and ideas about high-priority questions and issues surrounding services and supports to people with ASD of all ages, and specific research initiatives on ASD services and supports. For example, information is sought in the following areas that impact services and supports across the lifespan: education services, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.
Responses

Please send responses to iaccservices@mail.nih.gov no later than September 19, 2008. Please limit your response to one page and mark with this RFI identifier, NOT-MH-08-016, in the subject line. The responses received through this RFI will be collated, summarized, and provided to the IACC Services Subcommittee and the public. Any proprietary information should be so marked. The collected information will be analyzed and may appear in reports. Although the IACC Services Subcommittee will try to protect against the release of identifying information there is no guarantee of confidentiality.

A summary of the results obtained from the responses to this RFI will be available to the public on the IACC Website.
Inquiries

Inquiries regarding this notice may be directed to:

Azik Schwechter, Ph.D.
Office of Autism Research Coordination
National Institute of Mental Health
6001 Executive Boulevard, Room 8203, MSC 9669
Bethesda, MD 20892-9669
Telephone: (301) 443-7613
FAX: (301) 480-4415
Email: schwechtera@mailnih.gov

Kristiem10 said...

Amen! This is frustrating for me, too. I hope you send her this message, too.

Jennie said...

U r most awesome girl in world. I hope you send it too - it's great. Made me want to send it to my office mgr. with the ASD son.

Jen said...

Funny, well--not, that if there was a test to see if people were carriers for an "autism gene," doctors would be all over that, and you can bet that MANY people would sign up for that!

Sueblimely said...

I read an autism blog post today which questions whether fragile x should be considered part of the spectrum!! This blog was advocating the vaccine connection strongly so I suppose FX disproves his theories.