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 Spacing Out

Autism and Spacing Out

Excuse me . . . I’m sorry, but I’ve been talking to you for a half hour now and you haven’t heard a word I said . . .

This is a frustrating thing and unfortunately, it happens often. I well be sitting usually writing, sometimes drawing, other times embroidering (the three things I do more than anything else), when suddenly I look up and see some one standing over me, and asking why I haven’t answered them yet. Me? I’m sitting there confused as hell, wondering what it is I am supposed to be answering and how they got there without me noticing them.

I don’t talk, I write. I write a lot. I am often told people like my writing style, because it is unique, and I am often asked, if I could explain or teach them how I write so that they can learn my methods and write like I do. The problem comes when I try to explain what happens to me when I start writing. I guess, if you want to learn to write like me, than you’d have to learn to mimic one the the more outlandish symptoms of Autism: blocking out everything around you and seeing and hearing nothing.

Nothing. Period.

I can’t teach my writing method, because it’s not really teachable, all I can do, is try to explain it.

The biggest problem with my writing style, is the fact that I simply sit down and start writing. Literally. No matter where I am, or what I am doing, I simply sit down and start writing. This is such a huge problem, that you almost never see me go out in public unaccompanied by another adult. This is also why I do not live alone, why I do not drive a car, and why I can not hold a *regular* day job. I sit down where ever I am, when ever the mood strikes and just start writing. If you ever see a comic book character sitting cross legged on the floor in the middle of the milk aisle at Wal-Mart, writing away, well, that’s me.

I actually can not walk in places where I will have to cross the street or a parking lot, unless I have some one with me to guide me across the road, because I frequently, just stop to write right there in the cross walk. It’s a problem I have, and a really bad one that has caused me to be nearly hit by a car on countless occasions, because my mind no longer see things around me.

I once sat down and started writing, and didn’t stop for 48 hours . . . Did not eat, did not sleep, I completely lost track of time. I was totally taken by surprise when I realized the 2 whole calendar days had passed before I noticed it, because to me, it seemed like no more than 20 minutes had passed. The odd thing about this, though, is I only started doing this less than ten years ago, and this seemed to have happened shortly after a month with 4 deaths: first my horse, than my grandmother, than my dog Blackie, and than my other dog Muffin. All four of them died with in 3 weeks of each other. Stress, seems to be the triggering factor that shuts off my brain and causes me to not see or hear anything or any one around me and makes me simply start writing in an uncontrolled and unstoppable manner.

This *shutting off* and writing is the same reason why I rarely speak to people, because fact is, I rarely see them. I see the streets, I see the buildings, if there is a car made prior to 1975, I see that car and that car only and not the other cars speeding by. They simply become totally invisible to me. When I mentioned this to some one last year, they had an explanation which I had never heard of before, but quickly Googled and found out more about: she called it “second sight”.

She said that this “second sight” could explain both my seeing and talking with Etiole, as well, as my odd inability to see and hear people around me at certain times. She explained that “second sight” believers claim there are two worlds: the physical world and the spiritual world and that the co-exist one on top of the other, constantly intermingled, but that neither world is aware of the existence of the other, except on rare occasions when “sightings” (ghosts, faeries, aliens, angels, or demons) occur.

She also said that there is a high frequency of Autistic people being able to see through the barrier between the two worlds and see beings from the spirit world. She said that people who can see and otherwise interact with the normally invisible spirit world, are said to have the gift of “second sight” and she believed that this was what was happening when I see Etiole and when I seem to no longer be able to see or here people around me.

Well. Okay. Whatever. I actually haven’t been able to find much info on this “second sight” thing, so I don’t know if I should believe in “second sight” yet or not, but, it did make sense and sound like a plausible answer.

I do talk to people if I notice they are there. The trick is to get me to notice that you are there. Like I said, it’s like watching TV, and I have to switch from one channel to the other in order to notice you there. If I shut off the world in my head, I can see people around me and talk to them fine, the problem is, switching my mind out of the world I write about and into the real world where people around me live. It’s not easy. I know when I stopped talking. I can tell you the exact date: August 21, 1991, the day my best friend was murdered. I know when I started turning off the real world too: after the things that happened at church with the bishop and Pine Land Center. The real world simply became more than I was able to handle on my own and I had no friends or family to turn to.

This also explains my cloths. You see, I dress no different than the characters of my books, and to me this is perfectly normal, as it is the way all of them dress. I don’t notice that real people are dressed different than me, because I don’t very often see the real people around me, and it is not until some one comes up to me and asks me why I’m dressed like I am, that I am brought back from one world to the next, and see that, yes, in this world, I am dressed quite a bit different from other people.

But you see, there is another part of the problem: the people I write about are the people Etiole knows. His family, his friends, his enemies. When people ask me where I come up with my ideas, I can’t give them an answer they will believe.

I can’t tell them that I am writing down things that Etiole has told me about his world.

I can’t tell them that Etiole is not a fictional character from my books. I can’t tell them, that I don’t come up with these ideas, that it is Etiole who comes up with them, and that Etiole is a very real creature who lives along side us, even though very few humans have ever seen him.

I use to tell people these things, back in the 1980’s, but no one ever believed me when I told them, so I stopped telling them, and simply, stopped answering them at all.

Of course, my cloths, started when I was just 4 years old, and I was wearing my Wonder Woman underoos under my Cinderella dresses . . . I always did dress like a comic book hero gone princess. No one paid any attention to it though, until after I was about 22 years old, and people started questioning why I didn’t wear *normal* cloths, but the fact is, for me they are normal, because I have never worn any thing else.

Does having a mental illness effect my writing? Most certainly. It effects every thing in my life. But than again, as I have never been diagnosed as having a mental illness, there in lays the question: why do people think I have a mental illness? (Autism is a birth defect not an illness.)

As you can see when people say they think I have schizophrenia, or Aspengers, they are not saying so in jest, to be funny. They are very serious, and often very frightened of me when they say it. In nearly 40 years, I have yet to have a friendship last more than 6 months, because most people, once they get to know me, are completely terrified of me. At first they meet me and think I’m in costume and acting in character, and they think of it as some sort of role playing game, but once it dawns on them, that this is no act, this is no game, that my mind is what my mind is, and that I am like this 24-7-365, I never hear from them again. If I do hear from them again, it is only to ask if I have considered medication to make me *normal* yet.

My question is, Why would I want to be *normal*?

What incentive is there?

None that I can see.

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