Wednesday, July 27, 2016

Autistic Reality’s Public Comments for the 2016 Interagency Autism Coordinating Committee (IACC) Strategic Plan, by Alec Frazier and Autistic Reality

The Interagency Autism Coordinating Committee (IACC) is requesting public comments to inform the development of the 2016 IACC Strategic Plan. The objectives in the IACC Strategic Plan were last revised in 2011, and the Committee provided updates on the progress of the Strategic Plan in 2012 and 2013. The IACC Strategic Plan is organized around the following seven questions that are important for people with ASD and their families:
  1. When should I be concerned? (Diagnosis and Screening)
  2. How can I understand what is happening? (Underlying Biology of ASD)
  3. What caused this to happen and can this be prevented? (Risk Factors)
  4. Which treatments and interventions will help? (Treatments and Interventions)
  5. Where can I turn for services? (Services)
  6. What does the future hold, especially for adults? (Lifespan Issues)
  7. What other infrastructure and surveillance needs must be met? (Surveillance, Infrastructure, Workforce, Outreach, and Collaboration)

The IACC is requesting comment on what you consider to be the most important issues and remaining gaps related to these seven topical areas. Thank you for your interest and comments to assist the IACC in preparing the 2016 IACC Strategic Plan Update.

As Question 1: When should I be concerned? (Diagnosis and Screening)

Please identify what you consider the most important priorities and gaps in research, services, and policy for Question 1. Topics include: diagnosis and screening tools, early signs, symptoms, and biomarkers, identification of subgroups, disparities and diagnosis.

Autistic Reality firmly believes that being overly concerned about autism diagnosis and screening can be harmful to everyone involved. When diagnosing and screening, treating the individual who is being diagnosed and screened as a human being worthy of respect and dignity is paramount. Autistic individuals are not lab rats. Also very important during diagnosis and screening is not to treat autism as a problem or a defect. If you treat diagnosis and screening as if you are looking for a sickness or disease, then you are attaching unnecessary stigma to both the condition and the individual being screened and diagnosed. Autism is a form of diversity, not a sickness and not a disease. Autism does change the way that individuals act and think, but it is not a defect if properly accommodated and/or perceived. If you are a parent and/or a guardian suspect that autism must be an issue, then observe, check the sources, and check with a medical professional who will put your child’s needs first. Please make sure that your child has input and understands what is going on. Please impress this upon your child even if your child is nonverbal. Nonverbal does not mean stupid. If you are an adult looking for diagnosis of yourself, then you may handle these matters on your own if you are capable. Please be sure to demand the respect you deserve from any professionals you encounter who treat you as if you are a lesser person. If you are an adult looking for the diagnosis of another adult, then the issue is more complicated. In the opinion of Autistic Reality, the individual for whom you are seeking a diagnosis must need assistance dealing with the process, and you must be assigned as a legal guardian, power of attorney, or proxy. If the adult is capable or you do not have these powers, then there diagnosis and screening is none of your business unless they let you into it. Please understand that autism is widely varied, and no two cases will be a like. It is important to note that no one source will be able to nail things down for you concretely, and researching from multiple sources is important. In addition, no one person, no matter how knowledgeable, knows everything. The only person able to make it concrete diagnosis should be a licensed medical and/or mental health professional.

Question 2: How can I understand what is happening? (Biology of ASD)

Please identify what you consider the most important research priorities, policy issues, and gaps for Question 2. Topics include: molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD.

Autistic Reality believes that the biggest key is understanding that autism is not anyone’s fault. It is not a preventable condition caused by someone’s error, but rather a naturally occurring condition that has existed as long as has humanity. Education on natural forms of diversity including mental health issues is currently lacking, and simply must be improved. People must also learn how to shift the blame for disability away from a fault-based model. Understanding that mental health conditions occur naturally is extremely important. It is also very important to realize that males and females and old and young people can have autism, despite the common misconception that children are mostly affected by autism and that mostly males have autism. Autism may manifest itself slightly differently in females than it does in males. Autism often brings with it other conditions such as Obsessive-Compulsive Disorder (OCD), Bipolar Disorder, and ADD. Once again, it is important to realize that these conditions are not sicknesses or problems, but rather forms of mental diversity, which is called neurodiversity.

Question 3: What Caused This to Happen and Can It Be Prevented? (Risk Factors)

Please identify what you consider the most important research priorities, policy issues, and gaps for Question 3. Topics include: genetic and environmental risk factors, gene-environment interactions, and the potential role of epigenetics and the microbiome.

Autistic Reality must emphasize that autism can happen in anyone, and is biological. It is not caused by vaccinations or the fault of any individual or group. Any evidence that vaccinations, pollution, or any other artificial factors cause autism has been proven to be falsified. Autistic Reality believes that there is genetic predilection for autism, and that although environmental factors do not cause autism, they may impact the manifestation or severity of the condition. By environmental factors in the previous sentence, we do not mean pollution or vaccinations or the like, but rather we mean the environment in which the autistic individual exists: the living environment, their schooling environment, their working environment, etc. Autism cannot be prevented, nor should it, since it is a natural form of diversity just like being African-American or gay. To prevent autism is eugenics and genetic warfare, and altering the genetic code to eliminate undesirable traits is illegal.

Question 4. How can I understand what is happening? (Treatments and Interventions)

Please identify when you consider the most important priorities and gaps in research, services and policy for Question 4. Topics include: behavioral, medical/pharmacologic, educational, technology-based, and complementary/integrative interventions.

Autistic Reality believes that the best way to understand what is happening is to communicate with autistic individuals about the condition. Autistic individuals may not always be verbal, but they always understand you. This is very important to understand, since there is a common misconception that nonverbal autistic individuals cannot understand the world around them. This is false. The second best way to understand what is happening is to communicate with friends and peers of the autistic population whether or not they have autism. The third best way is to speak to the family members of those with autism, who often love their autistic family members, although they may have interests that cloud their judgments. The fourth best way is to talk to clinicians and doctors. It must be understood that clinicians and doctors are in a business, and it also must be understood that they most frequently view autism as a sickness, which it is not. The same priority ranking system goes when dealing with books, websites, and other resources. Please steer away from Autism Speaks, as they are a eugenic-minded apologist group that wants to see autism gone and does not believe that the opinions of autistic individuals hold valid weight in the world. Please also steer away from the Autistic Self Advocacy Network, as they often use radical methods such as cyber bullying and character assassination if their very specific, often incorrect mindset is not met. A good organization would be the Autism Society of America. Please also understand that medication can work for the autistic population. While it is harmful to over-medicate, some medication may help with autism or co-occurring conditions. Behavioral modification is generally a bad idea, and instead one should seek to accommodate the autistic individual with their autistic habits intact. Nonetheless, adopting more appropriate habits when necessary should also be taught, so that the autistic individual has a safe zone of time and space to be themselves, and also does not act untoward in social settings. Many autistic people have sensory difficulties that get in the way of enjoying social settings. Autistic Reality believes that with proper conditioning, autistic individuals have the potential to become accustomed to settings which may initially trigger their sensory difficulties. Therefore, autistic individuals should be encouraged and prompted to test their limits safely, and grow their potential.

Question 5. Where can I turn for services? (Services)

Please identify what you consider the most important services research, delivery, and policy priorities and gaps for Question 5. Topics include: service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion.

Autistic Reality believes that for general advisement on services and benefits, one should seek benefits advisement. Benefits advisement can tell you what services are available for your needs, and help you get them. Every area in this country has a corresponding Center for Independent Living, or CIL. Your CIL frequently provides benefits advisement, free of charge. Similarly, if one is having an access issue and needs advocacy done for legal, educational, transportation, housing, and more your CIL will often have people to help with that, too. Another important service includes therapy. This may include talk therapy, art therapy, occupational therapy, or just about any kind of therapeutic practice. Please understand that there is no shame in getting any kind of reputable therapy. In fact, Autistic Reality believes that therapy can greatly improve the quality of one’s life, and that it should be a point of pride, rather than shame. When one is seeking therapy, they are seeking to better their quality of life. That sounds like something of which to be proud! Therapy also often works for families and couples, and quality counseling may work for other groups as well. In general, Autistic Reality recommends public schooling. Children should have Individualized Education Programs (IEPs), and adults should have accommodation in the workplace. This means coordinating with special education, disability services offices, and human resources departments in order to get the proper accommodations and/or services. Please understand that as the autistic individual ages out of childhood, there is a good chance that they will become competent enough to manage their own affairs. Parents and/or guardians should not only let them do this, but should provide guidance and enable them to make their own decisions, with proper training to do so. Autistic youths should sit in on many of the meetings that involve them, especially their educational planning meetings. Autistic individuals both young and old should continuously be asked for their input not only into their services, but into life in general.

Question 6. What does the future hold, particularly for adults? (Lifespan Issues)

Please identify what you consider the most important priorities and gaps in research, services, and policy issues, relevant to Question 6. Topics include: health and quality of life across the lifespan, aging, transition, and adult services, including education, vocational training, employment, housing, and financial planning and community integration.

It is important to realize that a huge population of autistic adults exists in today’s society, and has always existed since the beginning of time. One of the biggest problems with lifespan issues today is the common misconception that autism only affects children. This is just false. To better help of autistic adults, life skills training is essential. Autistic Reality is of the firm opinion that life skills should be required learning for every single high school student. Everyone, not just autistic individuals, needs to know how to manage finances, rent an apartment, find a job, and deal with professional interactions. In addition, specialized life skills services need to be available to the autistic population to help the autistic population better understand how to navigate the world around them. In addition, non-autistic individuals need to be better trained on accepting people who are not like themselves, and understanding how diversity of all kinds is only natural inhumanity. Vocational training, employment, and financial training should, in a perfect world, be available free of charge to those who request it, both autistic and non-autistic. Employers need to be much more willing to hire autistic individuals, whether or not they identify as autistic in their application or workplace. This includes both traditionally hired individuals, and individuals hired through various work forms for the disabled. Social clubs and common interest groups with bylaws need to include sections of procedure relating to those with disabilities, both visible and invisible. They also need to enforce these bylaws. Finally, organizations that exist to help the disabled need to streamline their services, and be easier to work with. Autistic Reality understands the absolute nightmare of bureaucracy governing these organizations. Nevertheless, this does not mean that these organizations do not have to do their jobs.

Question 7. What other infrastructure and surveillance needs must be met? (Lifespan Issues)

Please identify what you consider the most important research priorities, policy issues, and gaps for Question 7. Topics include: research infrastructure needs, AST surveillance research, research workforce development, dissemination of research information, and strengthening collaboration.

The most important priority is to understand that autism is not a problem, but a form of biological diversity. Organizations that are founded on the principle that autistic individuals are incompetent or lesser human beings need to be done away with, and have their public powers severely curtailed or even revoked. This includes organizations such as Autism Speaks. Similarly, other organizations such as the Autistic Self Advocacy Network (ASAN) which work on a principle of being incredibly narrow-minded and bullying anyone who isn’t equally narrow-minded have absolutely no place in the advocacy world. People need to be more accepting of others. Autistic individuals do not meet a cookie-cutter mold, and should not have to conform to the unreasonable wishes of anyone, whether they be outside or within the disabled community. Workforce development must be researched, as must universal design with autistic individuals in mind. Research information must be available to the public. Asking the public to pay for research information which may help them is, in the eyes of Autistic Reality, completely unreasonable. Individuals wishing to do their own research should be able to do so, but must only be enabled providing that they have no unsafe biases. Autistic Reality also calls for the strengthening of inter-disability networks, and the strengthening of relationships between non-disability groups and disability related groups. Finally, Autistic Reality tends to frown on the electronic surveillance of autistic individuals. Autistic individuals are not incompetent, but rather sometimes have trouble expressing themselves. If there is surveillance, it should be completely voluntary.

This blog posting is both the personal opinion of Alec Frazier, and the professional policy of his advocacy firm, Autistic Reality. If you oppose it, please screen grab it! We are very proud of this opinion!