http://www.getnatehome.com/faq.html

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To Whom It May Concern:

The Autistic Self Advocacy Network (ASAN) is an international organization of adults and youth on the autism spectrum, including Asperger’s Syndrome, working to promote the interests of the autistic self-advocate community through public policy and social change advocacy. We are writing as friends of the court to express our concern about the treatment of Nate Tseglin, a young adult with a diagnosis of Asperger’s Syndrome who has been taken away from his family and placed in an institution under heavy psychotropic medication.

The right of individuals with disabilities to live in the community has been well established by the United States Supreme Court under the landmark Olmstead v. L.C. decision. The ruling requires states to shift funding from institutional placements to community living supports. Given the clear evidence that institutional settings and the indiscriminate use of psychotropic medication negatively impact the quality of life of autistic adults and youth, we are concerned by Nate’s continued placement under restraint in a residential facility where he is isolated from his family, his community, and any meaningful educational or social opportunities. The overwhelming consensus of the scientific community indicates that such a placement is inappropriate, unnecessary, and counterproductive.

Scientific studies have not found that autistic persons are more likely to commit violent acts or violent crimes than non-autistic persons despite some media sensationalism of isolated cases of violence (Murrie, Warren, Kristiannsson, & Dietz, 2002; Barry-Walsh & Mullen, 2004). Autistic persons are, however, more likely to experience depression, anxiety, and low self-esteem, for which cognitive-behavior therapy (CBT) and one-on-one talk counseling are the recommended interventions (Stewart, Barnard, Pearson, Hasan, & O’Brien, 2006; Sofronoff, Attwood, & Hinton, 2005). Autistic persons also require positive support systems, frequent encouragement and praise, and living and learning environments that are compatible with their cognitive strengths, challenges, and preferences in order to achieve success in their life pursuits and gain a high quality of life (Renty & Roeyers, 2006; Plimley, 2007). Psychotropic medications should always be used with extreme caution with autistic persons as typically these medications are not specifically tested on this population in clinical studies, and psychotropic medications may cause substantial harm if used in an indiscriminate fashion.

Nate’s current placement does not meet his needs and is likely to result in long-term physical and emotional damage. We urge the Court to recommend that Nate be removed from the Fairview Developmental Center and returned to the community.

Regards,

Ari Ne’eman
The Autistic Self Advocacy Network,
President
1101 15th Street, NW Suite 1212
Washington, DC 20005
aneeman@autisticadvocacy.org
(732) 763-5530

Scott Michael Robertson
The Autistic Self Advocacy Network,
Vice President
srobertson@autisticadvocacy.org
(973) 464-6315

References:

Barry-Walsh, J. B., & Mullen, P. E. (2004). Forensic Aspects of Asperger’s Syndrome. The Journal of Forensic Psychiatry & Psychology, 15(1), 96-107.Murrie, D. C.,

Warren, J. I., Kristiannsson, M., & Dietz, P. E. (2002). Asperger’s Syndrome in Forensic Settings. International Journal of Forensic Mental Health, 1(1), 59-70.

Plimley, L. A. (2007). A Review Of Quality Of Life Issues And People With Autism Spectrum Disorders. British Journal of Learning Disabilities, 35(4), 205-213.

Renty, J. O., & Roeyers, H. (2006). Quality of life in high-functioning adults with autism spectrum disorder: The predictive Value of Disability And Support Characteristics. Autism, 10(5), 511-524.

Sofronoff, K., Attwood, T., & Hinton, S. (2005) A randomised controlled trial of a CBT intervention for anxiety in children with Asperger syndrome, Journal of Child Psychology and Psychiatry 46 (11) , 1152–1160

Stewart, M. E., Barnard, L., Pearson, J., Hasan R., & O’Brien, G. (2006) Presentation of depression in autism and Asperger syndrome: A review, Autism, 10 (1), 103-116

I can say happily that he is now 10, and doing 95% better with behaviors since he is off of ALL meds (none helped). Except he takes something to help him sleep at night. You see, physical activity, OT, PT, and sleeping at night have done an amazing amount of good! I could not be happier and more proud of my son who has been horribly misunderstood in the public realm, treated as defiant or a behavior problem.

This situation just reflects a very disheartening outlook on the future of so many kids like ours if things don’t change on a larger scale soon. Many people still have no idea how much of the population we are talking about and how it will affect our/their education and medical systems.

I hope things have become much better for your daughter—we’ve been through some similar situations here in New Jersey about our son who has a history of SIBs; there would be disputes between us and the school district about bruises. Not a good situation.