Resources:
Where to find ACTUAL (Accurate) Information on ACTUAL Mental Illnesses

Every year since 2004, I post in the Mental Illness thread on NaNoWriMo, a list of places where authors can find actual/accurate information on a variety of mental illnesses and physical disabilities to help them write their characters more accurately. Most of these site also have lists of other sites as well.

Here for you now, is that list:

Act Early on Developmental Concerns: Partnering with Early Intervention 

Action on Mental Illness 

ADDitude 

Adolescents with autism spectrum disorder at risk for bullying

Advancing Futures for Adults with Autism 

Advice for autistic adults about work - NASAlmost half of kids with autism are bullied, study shows

American Association of People with Disabilities 

American Association on Intellectual and Developmental Disabilities 

American Council of the Blind 

American Diabetes Association 

American Foundation for the Blind 

American Lung Association 

American Medical Association 

American Psychological Association 

American Psychological Association's Trauma Psychology Division 

American Psychologist® 

American Trauma Society 

Americans Disabled for Accessible Public Transit 

An Anti-Bullying Intervention for Children with Autism 

Anxiety and Depression Association of America 

AnxietySocialNet - Agoraphobia support groups and more 

Arc (formerly known as Association for Retarded Citizens of the United States; the oldest mental health advocacy group, founded in 1953)   

Archives of Scientific Psychology®

Are Autistic People More Sensitive To Trauma

Asian American Journal of Psychology 

Aspies For Freedom 

Assistance Dog Advocacy Project  

Association for Applied Psychophysiology and Biofeedback 

Association for Real Change 

Association of University Centers on Disabilities 

Australian Centre for Posttraumatic Mental Health 

Australasian Society for Traumatic Stress Studies 

Autism Awareness.com  

Autism Awareness Online 

Autism and Asperger Syndrome Educator’s Guides, Organization for Autism Research (OAR) 

AutismCares 

Autism Genetics Initiative Data Archive 

Autism Genetics Resource Exchange 

Autism Network International 

Autism NOW 

Autism Society 

Autism Society of Maine 

Autism Speaks 

The Autism Speaks Transition Tool Kit 

Autistic Self Advocacy Network 

Autism Source, Autism Society of America (ASA) 

Autism Spectrum Disorder and bullying 

Autism Wandering Awareness Alerts Response Education (AWAARE) 

Behavior Analysis: Research and Practice 

Biofeedback Foundation of Europe 

BC Schizophrenia Society Foundation 

Brain Poke 3.0 

Brian Othmer Foundation 

Bullying and Autism - Medical Home Portal 

Bullying and Autism Spectrum Disorders: guidance for 

Bullying and autism spectrum disorders - Norfolk Schools 

Bullying Experiences Among Children and Youth with Autism 

Bullying For Parents 

Bullying No Way! 

Bully Stoppers - Victorian Government

Canadian Foundation for Trauma Research & Education 

Canadian National Institute for the Blind 

Canadian Psychology / Psychologie canadienne 

Cannon (1942/1957). "Voodoo" death. (Walter Cannon's seminal article on death through the shock of terror.)

Care For Disabled Veterans: Acknowledging Post-traumatic Stress Disorder from Iraq War Experience 

Caring for Children With Autism Spectrum Disorders: A Resource Toolkit for Clinicians 

CDC’s Disability and Health Program 

CDC’s National Center on Birth Defects and Developmental Disabilities Funding Opportunities 

The Center on the Social and Emotional Foundations for Early Learning (CSEFEL) 

Center for Evolutionary Psychology 

Child Abuse Prevention Network 

The Child Survivor of Traumatic Stress [newsletter] 

The ChildTrauma Academy 

Child Trauma Institute 

Children and Adults with Attention Deficit Hyperactivity Disorder 

Children’s Health Insurance Program 

Children with Disabilities and Special Needs - Patricia E Kefalas Dudek - Advocate For Elders, People With Disabilities, and Their Families:  

Choices In Recovery 

Clinical Practice in Pediatric Psychology® 

ClinicalTrials.gov 

Code of Federal Regulations, Title 45, Part 46 

Community Alliance for the Ethical Treatment of Youth 

Council of Parent Attorneys and Advocates 

Cultural Diversity & Ethnic Minority Psychology® 

Data Resource Center for Child and Adolescent Health 

Davidson College - Abnormal Psychology in the Department of Psychology - (not a group, but lots of info about a wide range of mental illness - great if you need a general definition of what an illness is, written in non-medical language) 

The Decline in Child Sexual Abuse Cases. 

Department of Education 

Depression and Bipolar Support Alliance 

Developmental and Behavioral Pediatrics Online 

Developmental Screening/Testing Coding

Diagnostic and Statistical Manual of Mental Disorders 

Disability Rights Education and Defense Fund 

Disability Rights Movement - Patricia E Kefalas Dudek - Advocate For Elders, People With Disabilities, and Their Families:  

Disabled American Veterans 

Disabled Peoples' International 

DisAbled Women's Network Canada 

Down Syndrome Advocacy Foundation 

Dreams for Kids 

Drew Westen's Lab of Personality & Psychopathology 

Easter Seals 

Eastern Association for the Surgery of Trauma 

EEG & Clinical Neuroscience Society 

The Effects of Psychological Trauma on Children with Autism

Elder Care - Patricia E Kefalas Dudek - Advocate For Elders, People With Disabilities, and Their Families:  

Emerson Training Seminars 

The Empowerment Council 

End of Life Issues - Patricia E Kefalas Dudek - Advocate For Elders, People With Disabilities, and Their Families: 

Equal Employment Opportunity Commission 

Eric H. Chudler's Home Page 

European Federation of Associations of Families with Mental Illness 

EFORT European Federation of National Associations of Orthopaedics and Traumatology 

European Society for Trauma and Dissociation 

European Society for Traumatic Stress Studies 

Exploring the Nature of Traumatic Memory 

Family Association for Mental Health Everywhere 

Families for Depression Awareness 

Family Council - Empowerment For Families 

Find Your Local Trauma Center 

Foundations of Positive Psychology 

Freedom From Fear 

F.R.I.E.N.D.S. Down Syndrome Advocacy Group 

Friends for Mental Health 

Galloway's Society for the Blind 

Handicap International 

Health Psychology® 

Health Resources and Services Administration 

Human Behavior and Evolution Society 

Infinite Ability 

Information Sheet Bullying and Autism Spectrum Disorders 

International Bipolar Foundation 

The International Classification of Diseases 

International Consortium for Brain Mapping 

International Disability and Development Consortium 

International Society for Neuronal Regulation 

International Society for Traumatic Stress Studies 

International Trauma Studies Program 

Internet Mental Health (a database of links to mental health websites - not a professional organization - very old site, some links broken/some info outdated) 

Journal of Abnormal Psychology® 

Journal of Applied Psychology® 

The Journal of Injury and Violence Research (JIVR) 

Journal of Personality and Social Psychology® 

Journal of Rural Mental Health® 

Leaving the Mentally Ill Out in the Cold (newspaper/blog post) 

Learning Disabilities Association of America - Disability Rights and Advocacy 

Lew Goldberg's International Personality Item Pool 

Life Journey Through Autism Series, Organization for Autism Research (OAR) 

Lyme Disease.org 

M-CHAT 

M-CHAT Scoring Instructions

M-CHAT Scoring Template

M-CHAT Follow-up Interview 

Maeve: Psychiatric Service Dog and Mental Health Advocate 

Maine Autism Alliance 

Marriage Advocates - Infidelity and Post Traumatic Stress Disorder 

Mencap (The Royal Society for Mentally Handicapped Children and Adults) 

Mental Disability Advocacy Center 

Mental Health Advocacy Inc 

Mental Health Advocacy Services 

Mental Health America 

Mental Health for Youth in Armed Conflict 

Mental Health Services Locator, National Mental Health Information Center 

Mental Wellness Today (magazine - has large article database) 

MindFreedom International 

MIT: OpenCourseWare 

Mood Disorders Society of Canada 

Mood Disorders Association of Ontario -  Helpful Links 

Muscular Dystrophy Association 

Naropa University: Somatic Counseling Psychology 

National Advocate for People with Down Syndrome 

National Association of County and City Health Officials 

National Association for the Education of Young Children (NAEYC) 

National Alliance on Mental Illness 

National Association of the Deaf 

National Association of Special Education Teachers 

National Autistic Society 

National Centre Against Bullying - The Alannah and Madeline Foundation

National Center for Education Statistics 

National Center for Health Statistics 

National Center of Medical Home Initiatives for Children with Special Needs 

National Center for PTSD

National Child Traumatic Stress Network 

National Database for Autism Research 

National Dissemination Center for Children with Disabilities (NICHCY) 

National MS Society 

National Network of Adult and Adolescent Children who have a Mentally Ill Parent 

The National Professional Development Center on Autism Spectrum Disorders 

NCP Clinicians Trauma Update Online 

Neuropsychology Central 

NeuroScience Center 

North American Society for Childhood Onset Schizophrenia 

Office of the Children's eSafety Commissioner - Australian Government

Office of Special Education and Rehabilitative Services 

Open Culture: Free Online Classes 

Open The Doors 

Operation Autism for Military Families 

A Parent’s Guide to Evidence-Based Practice and Autism 

Parkinson's Disease Foundation 

Personality Theories 

Pet Partners - Denied Access, Now What? 

Post-Traumatic Stress Disorder - Patricia E Kefalas Dudek - Advocate For Elders, People With Disabilities, and Their Families:  

The PTSD Alliance 

The Posttraumatic Stress Disorder (PTSD) Alliance 

PTSD Research Quarterly 

Prejudice. No way! - NSW Government

Primate Handedness and Brain Lateralization 

Psychological Trauma: Theory, Research, Practice, and Policy® 

Psychology of Violence 

Racism. No way! - NSW Government

Raindrop: Death Education for Children of all Ages 

Recovered Memories of Sexual Abuse: Research and Resources 

Reflections on The Problem of Psychic Trauma 

ReThink Mental Illness 

Retrieving, Assessing, and Classifying Traumatic Memories 

Sane Australia 

Schizophrenia and Related Disorders Alliance of America - SARDAA 

Schizophrenia Awareness Association of India 

Schizophrenia News and Information 

Schizophrenia Society of Canada 

School Accreditation, National Association for the Education of Young Children (NAEYC) 

Society for Neuroscience 

Special Education Advocacy 

Special Education Technical Assistance and Dissemination Network 

Spina Bifida Association of America 

Stress, Trauma and Sleep in Children 

Suicide.org 

Suicide Awareness Voices of Education 

Teaching Tips for Children and Adults with Autism 

Terrorism Injuries: Information, Dissemination and Exchange (TIIDE) 

Time To Change (personal stories about mental health stigma and discrimination, written by people with mental illnesses - updated daily) 

Trauma.org 

Trauma Clinic, London 

Trauma Intervention Programs, Inc. 

Trauma Pages 

The Traumatic Stress Centre (Wales) 

Trauma Survivors Network 

UCLA Brain Mapping Center 

United Cerebral Palsy 

UK Psychological Trauma Society 

University of Washington - Fact Sheets - Facts About Mental Illness and Violence 

Using Drawing as Intervention with Traumatized Children 

Visible Human Project 

VOR (formorly known as Voice of the Retarded; one of the oldest mental health advocacy groups, founded in 1983)  

Washington Autism Alliance & Advocacy 

Webcast Berkeley: online courses & speakers at UC Berkeley

The Whole Brain Atlas 

William Calvin's Page 

Young Children with Challenging Behavior 

Zero to Three 

Autism & Me:
The Squidoo Lens
10th Anniversary
(2007 to 2017)

During NaNoWriMo 2007's novel writing contest, a forum thread was started... a young author wanted to write an Autistic main character and asked on the NaNoWriMo forum if any one could tell her how to write a mental illness that she did not have and also knew no one with... the result was a 700 page non-fiction book, called "Autism and Me: On Being An Adult With Autism, A Look Into My Everyday Life."

Originally published on LuLu as a book for sale, a month later I unpublished it and released it as a free to read online series of articles on Squidoo. I continued to add new articles to the series on a near monthly basis in the 10 years since then.

The series of pages linked below, are those articles, the 2007 originals, the ones written in the years since, and the 2017 10th Anniversary updates on what has changed in the decade since those first articles were released.

Don't Know Where To Start?
Start With These Two First

A Plea To NaNoWriMo Overachievers: 
If You're Gonna Write Autistic Characters,
Then Stop Research Asperger's And 
Start Researching Autism For A Change!

"Can anyone tell me how to write characters with autism while avoiding stereotypes? Thank you."

Here is my response to a question from the NaNoWriMo forums on avoiding the stereo types when writing about characters with Autism:

My response, resulted in a 700+ page non-fiction book on living with autism. 

The response, went off into a rant, not because of the person asking the question, but instead, because of the 300+ Asperger's patients who responded to the question to tell her how to write ASPEGER'S characters, all while claiming their Asperger's was the SAME THING as Autism.

More then 2,000 forum posts were added to the thread, by these 300+ people, boldly spreading huge amounts of extremely inaccurate misinformation about what Autism is and is not, and helping to spread the urban myth that Aspergers is a type of Autism.

Sadly after taking 3 days to read every post on the thread, I finally reached the end to find that not even ONE of the more then 2,000 posts had given her ANY information about Autism.

My response is too long for one page, all pages are being linked to here:

Think you know what it's like to live with Autism?

You might be surprised how little you really know.

A look at REAL Autism and the myth spread by those with a self-diagnosis.

Advertisement:

Autism and Eye Contact

Autism and Eye Contact

Don’t you know it’s rude to stare?

Not a question asked to me, but a question I ask in response to people demanding I look at them when they talk.

Eye contact. Why do I need to be looking at you to hear what you are saying? I hear with my ears not my eyes. Why do I need to look at you to talk to you? I talk with my mouth not my eyes.

My lack of eye contact, my inability to speak around strangers, and my cloths, resulted in leading to my finding out I had Autism, when in 2005 I was summoned into court as a witness to some case which I had no idea why they were saying I was a witness too. I’ll recap:

A year before the fire or the flood which left my homeless, a man walked up to me, handed me a paper, told me I had been served and I had to show up in court to testify. I found this to be very confusing and puzzling because I didn’t know anything about this so call case that I was supposedly a witness too. I tried to explain this to the man, but I’m not good with verbal explanations. He told me that it didn’t matter wither I thought I was a witness or not, it was a court order and if I didn’t show up at court later that week, I would go to jail.

Very puzzled, and very reluctant, I went to court on the date in question and found it to be one of the most nerve wracking frustrating days of my entire life. First off I had to be searched by a guard, who took my tote bag and dumped it out. (I carry my writing paper, my art supplies, and comic books with me every where . . . it’s a really big tote bag. Next I was questioned about my cloths; this being one of my very first confrontations with the world outside of church, I was completely lost as to understand why I was being asked about my cloths. What was wrong with the way I was dressed?

My things were stuffed untidily and messed up back into my tote bag and I was told to sit on the right side of the court room. I sat in the very last pew and spent about an hour, resorting my crayons, comics and papers back into their proper order. I was interrupted while doing this, by my name being yelled out. Apparently the judge had called my name several times, but I had not heard her because I was busy fixing the mess the guard had made of my writing materials. I stood up, but had no idea what to do next. She called my name several more times, before finally telling me that I was supposed to come up front and sit in a chair in front of all of those people.

Up front, I was asked to repeat a bunch of words, but now came my first really big problem . . . I was being asked to open my mouth and speak, something I had not done in years, and I was being asked to do it in a room filled with 40 or 50 people. This was not my first time in court. When I was 14 I was the only living witness to the murder trail of my 5 friends killed on August 21, 1991. It was court that had stopped me talking before. I spent day after day after day of interrogation, back at my friend’s murder trail. When the murder trail ended, I went home and was never able to speak to a stranger again. Now, here I was again 14 years later in court. The judge asked me again and again to repeat the words of the police officer who was standing in front of me. I did. I tried, I said the words, again and again, but though my mouth moved not a sound came from my lips. It was like me throat was strangling them and refusing to let the words escape. The judge finally accepted a nod of yes and told me to sit down.

Than came the questions from the 2 men sitting at the tables in front of the judge. They had to ask and re-ask their questions several times, but I could not hear their words, all I could do was stare out at all of those faces, rows and rows of them sitting in the seats below. I think I answered some of their questions because the judge kept telling me I had to speak loud enough for the tape recorder to hear me, and finally she said she had had “enough of this circus”. She than turned to me and told me to look at her. I looked at her hands. She repeatedly demanded I look at her. Than she started yelling and saying that I was a grown woman acting like a child, she started yelling at me about my inappropriate cloths, my refusal to answer questions, my refusal to comply with orders, and my arrogance at not making eye contact. My cloths again. What was wrong with my cloths? She dismissed me as a witness, but told me not to leave the court, but to go wait at the front window.

While I was sitting on the bench waiting, several men and women, I assume to be lawyers based on the fact that they were wearing suits and carrying brief cases and were in a court house, stopped to talk to me about my cloths. Most asked if I had been on my way to a party or a Ren faire when I had come to court. A few elderly women hobbled over to me and started talking about how nice it was to see people dressing up again like when they were young. Someone asked if I was a “dead head”. Dozens of people walked past me ever few minutes going in or out of one of the three court rooms, and nearly every one of them, made a point to stop and ask me about my cloths. With each question, I was growing ever more puzzled about this obsession every one seemed to have with walking up to me and talking about my cloths.

About three hours later the woman at the front window called my name and handed me a paper. It was a court order to see a psychologist, with a slip of paper saying that the State of Maine was going to pay for one 3 hour appointment. As I turned to leave, the woman commented that she liked my costume.

I was wearing a Josephine Empire gown of wedge wood blue, with a 3 foot long train. Over which I wore a 7 yard blue velvet burnoose (a type of hooded cape).

A few weeks later at the psychologist’s office, I was greeted with: “So you are Wendy. Why are you dressed like that?”. (I was wearing a full kimono — many layers of kimono). He told me he had been reading my case (What case? I have a case? Since when?) sent to him by the judge. He commented several more times about my cloths. Asked if he could see the contents of my tote bag, and than spent the rest of the time asking me about my drawings and writings and how I lived my life. During the course of the meeting he commented several times on my “bizarre accent” and use of old style language, which he said was seen only in rare cases of twins left to be raised by themselves. He called it “twin-language”. He said he had read cases of it, but that he had never witnessed it himself before. By the end of the meeting he had become very excited and was acting like he had just discovered the Lost City of Eldorado or something.

He ended by writing up a paper which he said was a request to the State for funding to do a research study on me, saying that I was an “anomaly” which he could not properly diagnose, because I was displaying so many symptoms of so many disorders.

I left his office that day very confused, and for the first time in my life, noticing what people around me were wearing and noticing that it was very different from what I was wearing. I was also, now realizing for the first time, that people look into your eyes when they talk to each other. I was also realizing that people on the street around his office seemed to be doing a lot of standing around (wasting their time) and talking to each other. It has only been 4 years since that meeting, and I still am having a very hard time processing the fact that people talk a lot, people look at each other a lot, and people . . . well, you people just plain dress really weird as far as I can see.

I have not again heard back from the psychologist, however, both my mother and my father have gotten letters from him, and each of them, and my mom’s current husband, and my three brothers were called in to be “evaluated” by him to see if the whole family was like me, or if I was the only one in the family who was like this. I don’t know who else he contacted, but I suspect he was the one who sent the social worker to “the tent” a year later, after the flood and the fire left me homeless and living under a tarp.

All this, because I wouldn’t look a judge in the eye? I remain confused over why the judge responded the way she did to me, and I remain equally confused as to why the psychologist responded the way he did to me. It was my first real contact with any one outside of the Mormon church and I found it very strange. But, as a result of the judge and the psychologist, I also found out that outside of the Mormon church, people do not believe in demon possession, and unlike the Mormon leaders who always said I acted the way I did because I was possessed by a demon, an evil spirit, or a poltergeist, I had now learned from the psychologist that what they had called evil spirits was really some sort of birth defect in my brain, which causes me to see the world on a different brain wave pattern than every one else, resulting in me acting, dressing, and otherwise responding differently to things than does every one else. Well, I must say his medial diagnosis certainly made much more logical sense to me than the religious leaders’ accusation of demon possession.

And now that I know the church leaders were wrong when they called me demon possessed, I no longer feel quite so much like an outcast, unloved, and alone. I’ve since looked into this whole Autism thing, and I must say, it’s kind of a sigh of relief, because now I know what is “wrong” with me, and now, I can figure out how to work my life around it.

The section above was originally written in 2007. A 2017 10th Anniversary update is coming soon and will appear in this section below.

More topics I write about:

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