Do you have a sick child with an autism diagnosis?

Action Alert Provided by Safe Minds

Editors Note: Lisa Ackerman

cal to action 

ACTION ALERT!

Let the IACC and AAP know how sick your autistic child is/was, and about their unmet medical needs.

SafeMinds believes that the lack of appropriate medical treatment for individuals with autism is a violation of basic human rights. Together we can improve the lives of children with autism now, but we need your help.

The IACC (NIH’s Interagency Autism Coordinating Committee) added the existence of co-occurring conditions associated with autism in the strategic plan for autism research back in 2011, acknowledging the need to better understand the scope and cause of these conditions, and the need for multidisciplinary heath assessments and effective treatment guidelines. But to date, far too little progress has been made. In an effort to address this urgent unmet need the IACC has invited Dr. Perrin, President of the American

Academy of Pediatrics, to attend the July 9th meeting to discuss what can be done to improve health care for children with autism. This is your chance to let them know what you think!

Those in the autism community understand that many of the behaviors present in children with autism, especially those that are self-injurious, are often related to physical pain and are treatable and preventable with appropriate medical interventions. Therefore, every effort must be made to increase the medical community’s knowledge and awareness of these co-existing medical conditions.

Please help SafeMinds educate the IACC and AAP regarding the unmet health care needs of children with autism by sending in your child’s medical history (including all diagnoses and co-occurring conditions), plus any suggestions for how to best address this issue, to the IACC via the IACC Public Inquiries inbox (IACCPublicInquiries@mail.nih.gov).  Also, please send a copy of your submission to IACC Member Lyn Redwood (Lyn@safeminds.org) so that she can reference your submission, if needed.  If you are able to travel or live in the Bethesda area, please consider attending the meeting and speaking at public comment.  (Public comments need to be submitted days in advance.) For information regarding how to register for the meeting and public comment, go to: http://iacc.hhs.gov/public-comment/2010/index.shtml.

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Editors Note:   I have been writing about the IACC since its inception (1,2,3.)  It was created to help drive the autism initiatives important to finding the cause and treatments for our community. It’s no secret – I  am not impressed with what they have accomplished with the close to $1 billion spent.

In the past 13, years we have witnessed that many children with autism are also very sick (4.) The autism costs for treatment and medical care to our country is overwhelming (5.)  The human costs are much higher.  We have to drive change that will provide treatment and answers for our children and the ones behind them.

The only way this process will work is if families are involved and share their story. We have to let the IACC know what is important to YOUR family. If you are upset, let them know. If you need help, let them know. Until you speak up there will not be support to drive change for your family.  Thank you Safe Minds and Lyn Redwood for being a shining light in this process of finding answers and support.

References:

1)      https://tacanowblog.com/2012/10/26/what-the-iacc-must-consider/

2)      IACC Reconvenes: http://www.tacanow.org/blog/the-iacc-reconvenes/

3)      What constitutes an emergency: http://www.tacanow.org/blog/what-constitutes-an-emergency/

4)      Many children with autism have other health problems: http://health.usnews.com/health-news/news/articles/2012/09/25/many-children-with-autism-have-other-health-problems-study-says

5)      The annual cost of Autism http://www.tacanow.org/blog/the-annual-cost-of-autism/

One Comment Add yours

  1. Marie Lannen says:

    Far too often, the mothers of children with autism, or if the the children suffer any other type of complex neurological presentation, and when the children also have comorbidity of any other type of illness, the mothers have been or are labelled with suffering from Munchaussen’s by Proxy Disorder. THIS MUST STOP!!

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