Miscellaneous Responses

Respondent	Response
Stephanie, Mother of 27 yr old autistic son	I don't even have a clue how to respond to this question!
Michael Sweeney, Autism Dad and Real Estate Developer	My wife covers the science of Autism for our family and I will ask her to respond separately. My request for being on a task force continues.
Daniel Valencia, Autistic Self Advocacy Network	Current public policy on autism is About Us Without Us. The IACC needs to be comprised 100% of autistic people, not a minority. Autistic people in a decision-making position would provide the most accurate account of autistic people's needs and priorities, which would in turn inform other policies.
Jim, Autism outreach fellowship	THE SPECTRUM NEEDS TO VE REDEFINED !!! To broad !! That's what is slowing everything down and clogging the system. Oh and incase I did not mention. CANBABIS IS THE ONLY MEDICATION THAT WORKES FOR SELF INJURIOUS BEHAVIORS. !!!
Ken	When man intervenes in natural processes, they make the condition worse. Autism is natural, the world needs special people. The world needs many of these people. Special people are what change the world, be part of it. Your child is different, not wrong, the world and the so called normal people have something wrong with it. Normal people resulted from people living in close communities and interbreeding. This cased significant insensitivity in the species. Get a clue. It is a perception, problem, people are not able to grasp.
Anonymous	Autism Speaks' focus on research and the negative messages that are sent out to scare people into donating are truly hurting the autism community, particularly adults living with autism.
Anonymous, IEP parent Advocate	This in non existent in nyc community schools.
Kelly Walmsley	No idea. You all may talk about those things in some conference room somewhere, but are you kidding me? You aren't doing any more than that. Pat yourselves on your backs and go get a latte. I'm sure you feel very accomplished. In the meantime, back at the ranch... Millions of exhausted and stressed out moms and dads are in the trenches just trying to make it through one more day with no help.
Raymond Mercola, J.D.	I would like to have a seat on this committee. I have a JD, have a son that is 18, and have written papers o. This subject for years. If becoming a member is possible, contact me.
Mariah Hahn, Rensselaer Polytechnic Institute	I do not have sufficient knowledge/experience to comment on this issue.
Aaron Wintrich	AUTISM PREVENTION VIDEO: https://www.youtube.com/watch?v=7Rt5Gq4ZgFU
Elizabeth Taylor	see question 1 response
Anonymous	See response to question 2.
Jim, Autism outreach fellowship	See question 3
Gordon Bourland, Ph.D., BCBA-D	See answer to #4.
Anonymous	Cannot see questions on survey.
bob horn, [Minor/Dependent Name Redacted]	problems with system
Heather Rocha	I
Anonymous	J
Daniel Valencia, Autistic Self Advocacy Network	Current public policy on autism is About Us Without Us. The IACC needs to be comprised 100% of autistic people, not a minority. Autistic people in a decision-making position would provide the most accurate account of autistic people's needs and priorities, which would in turn inform other policies.
Jim, Autism outreach fellowship	THE SPECTRUM NEEDS TO VE REDEFINED !!! To broad !! That's what is slowing everything down and clogging the system. Oh and incase I did not mention. CANBABIS IS THE ONLY MEDICATION THAT WORKES FOR SELF INJURIOUS BEHAVIORS. !!!
Ken	When man intervenes in natural processes, they make the condition worse. Autism is natural, the world needs special people. The world needs many of these people. Special people are what change the world, be part of it. Your child is different, not wrong, the world and the so called normal people have something wrong with it. Normal people resulted from people living in close communities and interbreeding. This cased significant insensitivity in the species. Get a clue. It is a perception, problem, people are not able to grasp.
Anonymous	Autism Speaks' focus on research and the negative messages that are sent out to scare people into donating are truly hurting the autism community, particularly adults living with autism.
Anonymous, IEP parent Advocate	This in non existent in nyc community schools.
Kelly Walmsley	No idea. You all may talk about those things in some conference room somewhere, but are you kidding me? You aren't doing any more than that. Pat yourselves on your backs and go get a latte. I'm sure you feel very accomplished. In the meantime, back at the ranch... Millions of exhausted and stressed out moms and dads are in the trenches just trying to make it through one more day with no help.
Raymond Mercola, J.D.	I would like to have a seat on this committee. I have a JD, have a son that is 18, and have written papers o. This subject for years. If becoming a member is possible, contact me.
Mariah Hahn, Rensselaer Polytechnic Institute	I do not have sufficient knowledge/experience to comment on this issue.
Aaron Wintrich	AUTISM PREVENTION VIDEO: https://www.youtube.com/watch?v=7Rt5Gq4ZgFU
Elizabeth Taylor	see question 1 response
Anonymous	See response to question 2.
Jim, Autism outreach fellowship	See question 3
Gordon Bourland, Ph.D., BCBA-D	See answer to #4.
Anonymous	Cannot see questions on survey.
bob horn, [Minor/Dependent Name Redacted]	problems with system
Heather Rocha	I
Anonymous	J
Kay Ashbrook, Myersbrook Supported Living Agency Corp.	I'm sick of "policy". I want action based modules based on real participants. There is no funding for Policy
Alexandrea Van Der Tuin, Disability Advocate and Wellness Coach who's an Aspie too.	Send me this survey next year far sooner.
Alexa Appel, Autistic person	HAHAHAHAHA you have wrecked that one so badly. Call Autism Speaks a hate group and stop considering us an epidemic, treat lives as a thing having inherent value regardless of our "contributions to society", have the police stop killing people. Period.
Alexandrea Van Der Tuin, Disability Advocate and Wellness Coach who's an Aspie too.	See previous answers.
Anonymous	Same as question 2!
Anonymous	See answer in question 4
Amber L Perry, ASAN	First step is to establish medical insurance, as services are costly. Make sure they cover meds as well. You can see a Psychologist. Here we have DD Brokerage Services, where afflicted adults can hire providers to work with them at home and in the community to be more independent. Independent living organizations help adults as well. You can also seek out a local art or music program, as autistic individuals love those activities. The Autism Society of America, ASAN are also good help. ASO is best for parents. Stay away from Autism Speaks, as they focus less on us and our condition and more on funding.
Anonymous	Health and safety.. First do no harm. Research Vaccines, research GMOs and research pesticides.. None of the research can be controlled big pharma or the government controlled by big pharm.
Anonymous	Provide education and meaningful therapy/ counseling to teens with autism and their families. Why is this so prevalent when these children are born from healthy pregnancies and strong family units?
Amy J, Mrs.	Here's a gap-the harm done to our children and the compensation that happens at home, further scrutinized by all the criminals standing behind empty badges and titles. Here is another-the fact that normally developing children, who haven't had their nervous systems damaged in crossing the line, who haven't had their care follow the guidelines (by those who have no accountability) get to use devices, while disadvantaged children have to hope to be able to afford theirs-the ones needed to help them communicate at all, not to mention 'get ahead.'
Anonymous	Too much focus and funding is spent on training We need real services now
Marie Arnold	I have observed that those who feel that they have experienced vaccine injury should be able to have coverage under their medical insurance, and they have NOT had this option, but rather have had to pay out of pocket. They should have their insurance provide for integrative medical procedures, as an option, rather than only prescription drugs.
Anonymous	Same answer as number 5 and I doubt this survey is going to help in any way.
Catherine Camp Boyle, Autism Housing Pathways	We need data on both the percentage of the homeless who have autism and the percentage of autistics who are homeless. Data from the UK indicate people with autism are not only more likely to be homeless, but more likely to "live rough", i.e., on the streets, rather than in shelters. A failure to address the distinct needs of the homeless with autism makes it harder to bring them in off the street. Many face difficulty maintaining tenancy due to a poor understanding of the "hidden curriculum" of being a tenant, a neighbor, and a roommate. This can lead to eviction and possibly a need to go to housing court to get back into public housing. We need housing design that reduces environmental triggers that can lead to difficulty maintaining tenancy due to property damage or conflict with neighbors. Those who cannot tolerate a roommate or can only work part-time struggle to afford housing. We need to address the problems of those with severe sensory and initiation issues that cause them to self-isolate. Some of these people never leave their homes, yet are considered to be "in the community". Housing options that are designed to meet the needs of this sub-population might allow them to participate in activities more often, while facilitating interaction with the broader community on terms that are comfortable for those with ASD. This can lead to a richer life and richer personal relationships that are all but impossible in traditional housing. In addition to those outlined earlier, interactions of people with ASD with law enforcement need to be a top priority. These individuals are more likely to interact with law enforcement with more negative consequences. Assuming individuals even survive the encounter, prison should not be our default housing and adult services provider. This raises the related issue of the school-to-prison pipeline. Another issue is the lack of acute psychiatric beds for non-verbal individuals in crisis.
Carolyn Gammicchia, Parent of 26 year old son diagnosed with autism after sustaining a vaccine injury from six vaccines given in one sitting.	I have provide comments in the past on this subject. Please refer to those comments please. 6. Increase access on education for families on alternatives to guardianship. 7. Increase independent research on inclusive supported community living options for adults with autism.
Eileen Nicole Simon, conradsimon.org	STOP CLAMPING THE UMBILICAL CORD: The protocol for clamping the umbilical cord immediately after birth must be stopped. Transition from placental to pulmonary respiration cannot be forced to take place instantly. Clamping the umbilical cord is a medical error. Lawsuits will be brought, as they were by victims of diethylstilbestrol (DES) given to women to prevent miscarriage. When it was discovered that daughters of DES mothers developed uterine cancers at an early age, DES use had to be immediately stopped. DES also caused testicular cancer and prevented sperm formation in the sons of mothers who received this treatment. Funds from lawsuit settlements should be put into building lifespan care facilities. RESUSCITATION PROTOCOLS: Resuscitation is currently begun by clamping the umbilical cord, then initiating ventilation of the lungs [1]. Ventilation was long ago shown to produce only patchy inflation of lobes adjacent to the airways [2]. Full inflation of all lobes of the lungs requires filling of the capillaries surrounding the alveoli. REFERENCES [1] Perlman JM et al. on behalf of the Neonatal Resuscitation Chapter Collaborators. Part 7: neonatal resuscitation: 2015 International Consensus on Cardiopulmonary Resuscitation and Emergency Cardiovascular Care Science With Treatment Recommendations. Circulation. 2015;132(suppl 1): S204'S241. [2] J'ykk' S. Capillary erection and the structural appearance of fetal and neonatal lungs. Acta Paediatr. 1958 Sep;47(5):484-500.
Lisa Ackerman, TACA	see question 1 answers
Susan bernard	Same reply as previous question
Paula Taylor	See previous info
Mark Justin Draycott, Parent of a person diagnosed	Please see response to previous questions. Appropriate employment opportunities must be developed for persons with an ASD label. In order to develop and offer appropriate job opportunities, it is critical to accurately assess a person's competence and intelligence. Furthermore, it is critical to develop methods that can be used by and with persons with neuro motor issues that affect speech and other fine motor skills to demonstrate their competency and intelligence.
Andrew Gammicchia	IACC needs to stop worrying about changing the public comment part of the meeting and focus on doing their jobs. You spent more time talking about public comment than you allowed for people to make comments.

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