Tuesday, August 19, 2008

kids with autism

Last week, I read an interesting article in the newspaper about a family with a child with autism who was asked to stay away from their local church's services. There were a variety of opinions expressed by parents of children with autism regarding this event. Some parents felt that this kind of behavior on the part of the church was discrimination, and particularly galling because of where it was coming from; some felt that it was irresponsible of the family to take their child into a setting which is known to be challenging.

I spent a summer working at a camp for people of all ages and abilities with autism. I also worked in a group home for five men with autism and did some research on the topic. Having experienced the enormous range of abilities or disabilities, I was wondering what I would have done in the above situation. My gut reaction would be to find a church that had a service that was perhaps adapted to my child, and such a church was mentioned. I think I would be hurt that my family was rejected. Then again, some of the behaviors associated with autism can be very challenging to handle in public. And, they are not always predictable. I remember very clearly on a Saturday taking one of the group home residents to see a children's movie, an activity he loved and had worked hard to earn. When we got to the theater, there was a line to buy tickets, and my friend/charge absolutely went ballistic, throwing himself on the ground in the parking lot, swearing (fortunately he was very difficult for most people to understand!), and kicking. This was completely unexpected. I was able to calm him down eventually, get him to come with me to the car, and we came up with another outing where an outburst would not be quite so embarrassing. However, he was allowed to earn another outing to a movie and did quite well. All of us at the group home would have been very sad to take this activity away from him.

I loved my time working with this challenging population of people, and I still enjoy the children with autism that I have in my practice. But I have to admit that it is one of the most difficult diagnoses to deal with as a physician, as an early interventionist, as a caregiver, and I'm sure as a parent.

3 comments:

Liz Ditz said...

Hi, Dr. Cvijanovich!

As a pediatrician working in a rural area, I'm writing to ask you to respond to a "Request for Information" from the government.

In other words, what services are working well in your treatment area, and what needs are unmet?

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

More information at

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

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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.

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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

Alex Cvijanovich said...

Thanks for the link, Liz! It's great to see that the interest in services for autism is piqued again. It seems like there has been a shift from concerns for services to concerns only about the cause and the relationship to vaccines.

Beth Finke said...

Hi Alex,

I moderate an autism blog for Easter Seals Headquarters in Chicago and thought you might like to know that I referred to your “Kids with Autism” post on the Easter Seals autism blog this week. You can read it here:

http://autismblog.easterseals.com/pragmatic-pediatrician-ponders-autism/