Tuesday, August 30, 2011

Adaptive First Eucharist Preparation Kit

Guest Blog
Mercedes and David Rizzo

 One Saturday evening 5 years ago, we were sitting in the pew with our four children at Mass. During the consecration, the priest held up the host and repeated the words of Jesus: “Take this all of you and eat.” The word “all” resonated in the spacious church and we realized that our 7-year-old daughter Danielle, who has autism, was certainly part of that “all.” But as we fixed our eyes on the consecrated bread and wine, we were both praying God in heaven; don’t let her spit it out.

Fortunately, when a few minutes later the time came for Danielle to receive her First Holy Communion, our prayers were answered. Danielle received the precious Body of Christ reverently. Kneeling together in silence, our family shared this very special moment in our daughter’s life, a moment we thought might never happen.

But our story didn’t begin that August evening. When Danielle was age 4, she was diagnosed with autism, a neurological condition that affects language, social interaction, and behavior. Danielle is non-verbal and we realized early on that for her to receive the gifts of the sacraments she would require a different approach than what is used for most children, including her two older brothers.

 Like many children with autism, Danielle is a visual learner and uses a picture-based language to communicate. Therefore, she needed a visual, picture-based approach to learn what was needed in order to be ready to receive her sacraments. She prepared for her First Holy Communion using a variety of homemade teaching tools. With this approach, she was able to satisfy the bishops’ requirements of distinguishing the consecrated host from ordinary food and receiving communion reverently. We were so proud of her!

Some time after this, our son Brendan, a Boy Scout, was nearing the rank of Eagle. As part of this process, he had to organize and implement a special project. He remembered how we had prepared Danielle for her First Communion and told us that other parents “should not have to reinvent the wheel.”

Therefore, for his Eagle Scout Project, he developed a special needs resource library in our parish to be used by children who might require special approaches to prepare for their sacraments. Out of this we put together additional materials that ultimately became The Adaptive First Eucharist Preparation Kit, now available through Loyola Press.

This brings us back to the words of Jesus quoted at the beginning of our story: “Take this all of you and eat.” We believe that Jesus was reaching out to all people everywhere, including people with cognitive and developmental disabilities. We believe strongly that Jesus meant to include all God’s children and that is why we are so excited to see the Adaptive First Eucharist Kit available as a resource to help this all become a reality.

Mercedes and David Rizzo
August 28, 2011


“A shining star to those interested in real science and evidence based interventions”

 (August 30, 2011—New York, NY)--The Autism Science Foundation, a not-for-profit organization dedicated to supporting and funding autism research, has been named the number one start-up nonprofit in the “Disabilities” category by Philanthropedia/Guidestar.

GuideStar is a nonprofit organization working to help donors make smarter donations by connecting them with some of the highest impact nonprofits in a cause. The rankings are based on the recommendations of over six dozen experts in the field.

“We are thrilled to be recognized as one of the nation’s most promising nonprofits” said Alison Singer, president of the Autism Science Foundation. “We are committed to funding critically needed autism research and to using our resources where they will have the greatest impact.” 

The Autism Science Foundation began funding research grants in its first year of operations and has increased its funding levels each year. Since 2009, it has funded nearly half a million dollars in research grants. 

Guidestar reports the following about the Autism Science Foundation on its website:
  • ASF has made a great contribution to empirically valid information on autism spectrum disorders.
  • This group funds outstanding autism research that is totally science based. They are a shining star to those interested in real science and evidence based interventions.
  • We find this group to operate with the highest level of integrity. They also have extremely low overhead. Every dollar possible is put toward autism research.
All the information collected and research used by Guidestar to compile the rankings are available at

This month, the Autism Science Foundation issued a Request for Applications for 2012 Pre- and Postdoctoral Fellowships.  In September, ASF will co-sponsor the KiDA Autism Summit in Irvine, California where Former First Lady Rosalynn Carter will give the keynote address. In October, ASF will sponsor the Rockland County Autism Symposium in Pearl River, New York.  Dr. Temple Grandin is the featured speaker at this annual event.

The Autism Science Foundation is a 501(c)(3) public charity. Its mission is to support autism research by providing funding to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

To learn more about the Autism Science Foundation’s programs visit

Summer roses

Thursday, August 25, 2011

Looking for Guest posters!!

Interested in Guest Posting? We want to hear from you!

Hi everyone! My name is Erica, and I am the social media manager for The Reading Kingdom (, an online reading program for kids ages 4 - 10, and those who are learning English as a second language. 

We have a blog whose primary audience is teachers, educators and parents. We are currently looking for bloggers to "guest post" on our blog. This summer, we hosted 4 columnists who blogged about food and nutrition for kids, parenting children with special needs, outdoor play ideas for kids, and music for children. 

We'd love to add more guest posters for the fall who can write about parenting kids on the spectrum or with autism. The posts don't have to be long, and they can be on any topic you think would fit in with our blog. Here are some examples of posts our guest posters sent to us this summer:

While we cannot offer monetary compensation for your guest posts, we can offer link backs to your blog, promotion of you through our social media assets like Twitter and Facebook, and we can offer you a space to promote anything you would like to promote (your blog, your book, your Twitter following... your charity- anything!)

If you are interested, please contact me at We'd love you to join our community!

Thank you!

Tuesday, August 23, 2011

Showcase: Autistic Hoya's The Significance of Semantics: Person-First Language: Why It Matters

The Significance of Semantics: Person-First Language: Why It Matters
by Lydia

At the Adult Services Subcommittee's final meeting last Wednesday, much to do was made about semantic disagreements -- "ASD individual" versus "individual with ASD," and of course, the dreaded "person with autism" or "person who has autism" versus "autistic person." These issues of semantics are hot button issues, and rightfully so.

Words and language are powerful tools by which an individual can express ideas, whether abstract, actionable, or concrete. As a writer and editor, I know firsthand that language and the meanings we attach to words very much impact, influence, develop, and change the attitudes that we have toward the subjects of discussion. That is why people are easily insulted or upset by word choices. Changing a phrase -- even if it holds the same literal meaning -- alters the subtle connotations and nuances of the speech, and communicates a different meaning and context than the original phrasing.

In the autism community, many self-advocates and their allies prefer terminology such as "Autistic," "Autistic person," or "Autistic individual" because we understand autism as an inherent part of an individual's identity -- the same way one refers to "Muslims," "African-Americans," "Lesbian/Gay/Bisexual/Transgender/Queer," "Chinese," "gifted," "athletic," or "Jewish." On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as "person with autism," "people with autism," or "individual with ASD" because they do not consider autism to be part of an individual's identity and do not want their children to be identified or referred to as "Autistic." They want "person-first language," that puts "person" before any identifier such as "autism," in order to emphasize the humanity of their children.

Yet, while I have been familiar with this rift among the autism community over the use of "person with autism" as opposed to "Autistic person," I hadn't fully explored the diversity of perspectives on the topic until now.

During last Wednesday's meeting, one subcommittee member, who I believe is the parent of an Autistic child, and an Autistic self-advocate expressed disagreement over the terms. Feedback from one of our members suggested changing "ASD individual" in our report to "individual with ASD." The Autistic self-advocate sitting beside me, who also has an Autistic brother, voiced her objection to use of the term. "I disagree," she said as the suggestion was read aloud. "I'm not a person with autism; I am Autistic."

Immediately, a mother sitting next to her responded, "I come from a time where that word, 'autistic,' had -- still has -- a negative meaning. It's offensive. When someone refers to my son as 'the autistic,' I cringe at that word; I get ready to defend him."

After our meeting, I took the time to explore a wealth of opinions online about the use of person-first language -- from those who support it and those who oppose it. The theory behind person-first language is that it puts the person before the disability or the condition, and emphasizes the value and worth of the individual by recognizing them as a person instead of a condition. And that's a great idea. In fact, when discussing specific people, I have never once heard anyone -- self-advocate, parent, teacher, or otherwise -- refer to a person as anything except by his or her name. I can't think of any teacher -- at least any decent one -- who would refer to a student as "that Autistic kid," or "that kid with autism." And I certainly can't think of any parent who wouldn't refer to his or her child by name.

But why are we self-advocates so opposed to this terminology? Aren't we all about de-emphasizing and correcting inaccurate, misleading, and harmful stereotypes and attitudes? Right? From that other perspective, you would think we would support the use of person-first language, because we want to be seen as people with equal rights, value, and worth to non-Autistic people. But we don't. Because when people say "person with autism," it does have an attitudinal nuance. It suggests that the person can beseparated from autism, which simply isn't true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.

One argument I encountered in one of the more cogently-written papers in favor of person-first language expostulates that because cancer patients are referred to as "people with cancer" or "people who have cancer," as opposed to "cancerous people," the same principle should be used with autism. There are some fundamental flaws with this analogy, however.

Cancer is a disease that ultimately kills if not treated or put into long-term remission. There is absolutely nothing positive, edifying, or meaningful about cancer. Cancer is not a part of a person's identity or the way in which an individual experiences and understands the world around him or her. It is not all-pervasive.

Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person's identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.

What I found most interesting in reading this selection of articles and blog posts is that many of the samearguments are used for both positions, but with separate sides, naturally, coming to very divergent and contradictory conclusions.

Firstly, I saw in at least two articles in favor of using "person with autism" that the authors strongly oppose language referring to disabilities like "suffers from," (i.e. "Alan suffers from Asperger's syndrome;" "Joey, an autism sufferer;" etc.) which has traditionally been a talking point of self-advocates as well. I do understand that not everyone who supports the use of terminology "person with autism" would disagree with language like "suffers from," but it is still interesting that there are those who do. It suggests a fundamental shared value -- that people with different neurological conditions are not "suffering" because of their difference or disability.

Secondly, as alluded earlier, those on both sides want to emphasize the value and worth of the person. Person-first language advocates believe the best way to do this is through literally putting the noun identifying "person" before any other identifiers. (As noted in one of the other articles opposing person-first language, however, English is a language that puts adjectives before nouns, whereas there are multiple languages that always place adjectives after nouns. In Spanish, for example, "person with autism" is "persona con autismo," while "Autistic person" becomes "persona autística." In both cases, autism/Autistic follows the noun.) Person-first language opponents believe the best way to do this is by recognizing and edifying the person's identity as an Autistic person as opposed to shunting an essential part of the person's identity to the side in favor of political correctness.

It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity asan Autistic person. Referring to me as "a person with autism," or "an individual with ASD" demeans who I am because it denies who I am.

Lastly, what is most interesting indeed is the shared expressed sentiments that using or not using person-first language is necessary to change and shift societal attitudes toward Autistic people. Returning to the premise of this article, this is the sole reason why this debate continues to be argued and why many people on both sides regularly emerge upset and feel personally attacked. Language does play a large role in shaping societal attitudes.

But let's think about what we are doing when we use these terms. When we say "person with autism," we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word "with" or "has." Ultimately, what we are saying when we say "person with autism" is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual's identity as an Autistic person because we are saying that autism is something inherently bad like a disease.

Yet, when we say "Autistic person," we recognize, affirm, and validate an individual's identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person -- that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual's potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people--and that that's not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.

That's why, when I read a few articles scoffing entirely at the debate, and dismissing it as ultimately irrelevant (insisting that each person should use the terminology he or she prefers and to ignore what other people say or write), I was concerned. The question of person-first language is definitely important and cannot be disregarded. The way we use language affects those around us -- in our immediate communities and in society at large. Trends of language have the power to transform ideas and attitudes. To dismiss this as "a silly semantics argument" denies the power of language.

What does, however, disturb me is the vitriol during debates about this (and similar) topics in the autism community. While it is, as repeatedly emphasized, an important debate with huge ramifications both short-term and long-term, hurling ad hominem insults, making baseless accusations, and shouting over tables (or computer screens) at the people on the other side ultimately demeans both you and them. It shows great immaturity, inability to civilly and peaceably discuss important topics, and insensitivity to the personal experiences vested in each of us with a stake in this debate. Having strong opinions on a topic and being able to have a respectful discussion with someone else are not mutually exclusive.

So what can we do moving forward? Or, more importantly, what should we do? To those of you who use "person with autism," I will always respect your Constitutional right to express yourself however you like, but I urge you to reconsider the consequences of using such language. To those of you who use "Autistic person," I urge you to consistently use such phrasing everywhere possible, whenever discussing autism and issues that affect Autistic people, and to develop coherent, rational explanations for why you prefer this terminology, so that you can engage in such mutually respectful and civil exchanges with others.

That, actually, goes for everyone. If we ever want to accomplish anything as a community, as a movement, or as advocates, we cannot allow ourselves to be constantly divided by infighting and vicious bullying -- and yes, that occurs from all sides of these debates, not just one. It is imperative that we learn to engage critically and respectfully with one another, and to value each individual's voice and feelings as equally important. Otherwise, we'll become even more dysfunctional than my subcommittee has been in recent months.


Interested in other perspectives? Here are some links to feed your curiosity.

(A note: I believe fully in the freedom of expression and belief, and do not believe in censorship of people with whom I disagree. Thus, I have no policy about excluding or ignoring any particular individual, organization, or idea when linking offsite. Links offsite are not to be construed as endorsement or acceptance of the ideas and opinions expressed therein.)

People who use "autistic" or "autistic person":
- Why I dislike "person first" language by Jim Sinclair, founder of Autism Network International (ANI)
- 'Autistic' or 'person with autism'? by Jean Winegardner
- Autistic vs Person With Autism by Karin
- Autism-first Language by Elesia Ashkenazy, National Advisory Council of the Autism NOW Center
- Autism as a lifestyle as seen through the eyes of an autistic adult by Kassiane Sibley
- On Language by Gordon Darroch
- Climb off your high horse already by Rob Gorski
- Autism First (Again) by Jeff Gitchel (new!)

People who use "person with autism" or "person who has autism":
- People First Language: What it is and why it matters by the Arc of Anchorage
- Person First Language
- Put me first: The importance of person-first language by Mary Tobin, M.Ed.
- Person First Language by Katie Nelson
- An Autism Parent on Kathie Snow's People First Language by Julie L.
- People First Language by Kathie Snow (PDF)
- Olmsted on Autism: "Retards" and "Autistics" by Dan Olmsted

People who use both interchangeably:
- "Has Autism" versus "Is Autistic"; A muddled debate from Autism and Oughtisms
- The Last Word on "Person First" Language by Stuart Duncan
- Is It "Autistic Person" or "Person with Autism"? by Stuart Duncan

Monday, August 22, 2011

Showcase: Autistic Hoya's Self-Advocates: Parents Are Not (Always) Our Enemies

Self-Advocates: Parents Are Not (Always) Our Enemies

by Lydia

After reading conversations in the comments on blog posts or news articles, or even on posts on social networking sites like Facebook and Twitter, it is very easy for self-advocates to assume that all (or at least most) non-Autistic parents of Autistic children are our enemies. After all, most people who want to cure Autism are parents; most people who claim that "high-functioning people with Asperger's" aren't really Autistic; most people who claim that all self-advocates are in fact "high-functioning people with Asperger's" (which isn't true); most people who want research to focus on curing Autistic children; and most people who loathe the word "Autistic" and much prefer "person with Autism..." Well, most (but certainly not all) of these people, or at least the most vocal among them, are the non-Autistic parents of Autistic children.

The vitriolic fights between self-advocates and parents can be found quite easily anywhere on the internet -- and occasionally, in person as well. There was, actually, a very nasty email exchange quite full of ad hominems and personal attacks about two weeks ago among some of the members of my subcommitteealong those lines. (I did not add fuel to the fire, for the record.) Parents get furious with self-advocates for presuming to understand their children; self-advocates get furious with parents for completely misunderstanding the entire nature of Autism. Parents make us out to be the villains; self-advocates make out parents to be the villains.

This in mind, it never ceases to surprise and excite me when I actually encounter parents who agree with any or all of the issues most important to Autistic self-advocates. Last week, I had a wonderful conversation with the non-Autistic mother of a young Autistic son. Her son is non-speaking and has some difficult, destructive behaviors. According to her, he regressed with Applied Behavioral Analysis (ABA), but is doing very well with the TEACCH program.

This woman told me how she eschews the phrase "person with Autism." "My son does not have Autism," she said, "he is Autistic. Autism is a part of him. It's part of his personality. I love him the way he is. Other parents don't get it." She told me that she doesn't want to cure her son. "I'm so inspired by you -- by Autistic adults who I read on the internet. I'm fascinated by you. I wish other parents would understand that my son, their children, are going to grow up to be you, Lydia. They're going to grow up to be Ari [Ne'eman.]"

"Parents think, I got a good placement for my child, I don't want to rock the boat. No, sorry, I can't help you," she said to me. "But what happens to one child affects all of our children. We have to treat it like a civil rights issue." Now that piqued my interest, because the self-advocacy and neurodiversity movements treat our advocacy with the civil rights model as opposed to a medical model. It was strange and yet reassuring to hear this from a parent!

Not only is this woman not Autistic, but her son is what most people would call "low-functioning" or "severely Autistic." She fits the profile perfectly of so many parents who viciously attack the self-advocacy movement. Yet she shares in many of our goals and beliefs. So yes, the mythical parent allies of self-advocates do in fact exist. Let's remember this before accusing all parents of being our enemies.

Sunday, August 21, 2011

Beat the Back-to-School Jitters: Dr. Judy Horrocks' How can I make the first day of school easier for my child with autism?

by Dr. Judy Horrocks
As a parent it is difficult to send your special needs child off to a new teacher and possibly a new school.  Many parents over the years asked me, as the principal of a school for children with autism, the best approach to make a smooth transition.  I wish I had the perfect answer for you, but I can only give you some guidelines, the rest is based on your individual child. 
The transition from early intervention to a school aged program is particularly hard for parents.  Often parents have just become comfortable with the pre-school faculty and now they are very nervous about changing programs. Every parent has similar fears.  “Will my child be okay?  Will the adults understand my child’s needs?  Will my child be happy and comfortable in the new school?”  The less able the child can communicate the more pressure the parent feels. 
The best solution is building good communication directly with the teacher.  Often visiting the school early to meet the teacher can be comforting.  Not for the child, for you!  Children with autism can be very perceptive; the more anxiety you feel as a parent the more likely your child’s behavior may reflect that anxiety.  If you can lower your own anxiety about this transition, then it is more likely to proceed more comfortably for your child. 
If you plan to visit, schedule the appointment and do not expect the teacher to give you more than thirty minutes to an hour (and stick to it).  Good teachers have lots of preparation to do and will appreciate your respecting their time.  They also will understand your concerns.  As a parent just having a picture of the classroom and teacher can be very comforting.
Many children with autism do have a difficult time with change.  Change is change whether it is large or small.  They often take the same amount of time to adjust regardless.  We often think of this as over-reacting when the change is small, but we are not seeing the world through the child’s eyes.  Any change is hard, but children can adjust if the adults remain calm and in control.  Do not offer the child lots of choices; they really don’t know what will make them feel better!
Picture yourself in an airplane.  You look out the window and the wing is on fire.  Would you like to hear the voice of the pilot come over the intercom offering you choices of what to do?  In high anxiety situations, we would like the pilot’s voice to be calm, clear and tell us what to do!  This is true for everyone including children with autism.  You are their pilot, be calm and take control.  Often giving the student familiar routines can really lower their anxiety.  Be sure to start the day using familiar routines as much as possible. 
I am often asked if providing multiple visits to the school to allow the child to get used to the building is helpful.  I usually did not recommend this type of slow transition.  First, as I stated earlier, change is change and multiple visits that are each slightly different just creates more change not less.  The teacher establishing a set routine on the first day to be followed for the rest of the week is far more stress reducing. 
At any age, children with autism are not good at communicating well, particularly to new people.  Parents always know their children best and can be great sources of information for teachers.  Just don’t overwhelm the teacher with too much information.  The teacher will be best served by the following information: 
  1. What is reinforcing to your child? Often sending a favorite toy or book for the teacher to use on the first day is a wonderful idea.  It creates a bridge from home to the classroom.  (Just don’t send anything that would create havoc if accidently left at school.) 
  2. How do you comfort your child when they are upset?  The first day of school will be difficult and your child is likely to be upset at arrival.  Giving the teacher suggestions to comfort your child will help everyone have a better transition.  If your child would not accept a hug from a stranger, what else would you suggest? Do they have a special book or puzzle that may be calming?  Supply any materials.
  3. Does your child have eating issues?  Lunch and snack times can be either times of stress or pleasure for children with autism, let the teacher know what to expect. 
  4. Describe any feature or routine from the previous classroom.  For example, if they followed an individual visual schedule, what did it look like? (if possible send it in.)  Describe any reinforcement system used.
  5. If your child used a communication system, send it to school!  If you do not have it, describe it in detail.
After school, you will want to know every detail about the day.  Do not expect a complete accounting from the teacher.  They will have multiple parents all wanting details and it is impossible for them to give every parent a full accounting of the entire day.  Ask for a note or email with a general description of your child’s day, if you want any specific information, ask for it directly. 
Most children with autism will have difficulty describing the day, let if come out slowly over the course of the evening.  Do not try to interrogate them as soon as they arrive.  You will only increase their anxiety and you will probably not get the information you are seeking anyway.  It is more important to focus on your child’s comfort now then detailed information. 
Working in a school for children with autism, I always found it amazing how quickly most of the students adjusted to their new classrooms.  By the second day, as the classroom routines were established, the students relaxed and the new school year had begun!
I am starting a new blog to answer questions for parents, grandparents, teachers, etc.  Please feel free to visit and email any topics you have that you would like to see in a blog!  The website is:

Showcase: Xanthe from Asperger's Child

Today we're interviewing Xanthe from Asperger's Child.

Parts of your blog are fairly edgy. For example, your latest posts regarding Penelope Trunk, are as you put it, blunt. You question her honesty, and it had to take some courage to do so, given her past reactions. Do you weigh the pros and cons before writing posts you think might cause you negative attention?

Yes, of course I thought about it, especially because PT has a hoard of admiring fans and because she wrote about how she hassled a man over a tweet - she pretty much stalked him. To her credit, she leaves her criticism posts up too (so do I) and she wasn't very popular over her 'I have David...' post - some said she got the nukes out over a bow-and-arrow comment.

Someone tweeted me and said they thought my hub article would be more credible if I took out irrelevant stuff which just makes it look judgemental. He offered some specific pointers and I revised it to be more about questioning whether her behaviour is Asperger's or not. A internet psychologist writer that has recommended PT in the past said it was an excellent analysis and certainly food for thought.

When I started my 2 blogs on Asperger's and rejecting my religion, I was already aware of internet nutters from debating on the religious forum of hub pages - plenty of extremists there. I decided to blog under a pen-name because 1. I don't care about fame 2. I want to protect my family from stalker nutbars 3. I don't want employers and potential employers looking me up and judging me - I'd rather people at work don't know everything about me 4. I write about personal stuff, yet am a private person - it's not stuff I tell people about that I meet. 5. I don't want my son to be embarrassed by being easily identifiable. He thinks it's cool we're on a website 'undercover'. 6. I don't want the stress and drama of being sued

I decided that PT has no problem putting her opinion out there, and blogs are about opinions, so I'd put mine out there too. I hope that I managed to be objective and not judgemental of her as a person, but rather that I had problems with her claims and behaviour. My writing is blunt and confrontational, which some people find unsettling. There's an atheist, ex-minister blogger that is a published author that lives in the bible belt. He can't get work cleaning carpets because he is known & because of the bigotry.

I've considered taking down any photos of us from HubPages (where I first started writing) - concerns about deranged stalkers.

But I figure if they're old pics that don't really look like us now, it probably doesn't really matter. Someone would have to go to a lot of trouble to link me to my blog entries about how I find work and link it to my employer to get me fired. Or to dig around to find my real name. I don't want to censor stuff (apart from specific identifying details like names) because of fear of getting fired and having my family known and hassled.

You also write honestly and openly about issues with your mother and sister and how they treat you. Do you find that sharing this provides an outlet that is therapeutic and makes you able to continue to interact with them? Do you think there comes a point where the healthier thing to do is break off all contact permanently?

I want to write more about the dysfunction in my family particularly with religion, as it affected me a lot. I've been accused by my mother and sisters of being mentally unstable and bitter and angry for doing so, but this is not the case. I am writing about it objectively because there are many people out there in the same boat that grew up to believe they were the crazy ones. My mother is concerned about what people might think of her, despite the fact I use a pen-name and 99.99% of readers wouldn't know who we are.

I have even set up a facebook account in my pen-name and no longer post my articles on my 'real name' FB (which has several christians from my past). I have a note on there that if anyone wants to follow my blogs on asperger's and losing my religion, please contact me. I have a few christians that read my blogs and know who my family is, but they don't judge me. I got the idea of using a cartoon-style avatar from an atheist blogger who writes honestly about very personal stuff. He has a facebook account under his pen-name too.

I have suggested to my family that they don't have to read it if they find it uncomfortable. It is also my perspective and how it affected me. They want me to 'forgive and forget', yet I get the same hypocritical behaviour of where I get slaughtered and rejected, but they say I love you. To me, saying I love you and doing the opposite with behaviour is hypocrisy.

At first when I wrote about leaving religion on Hub Pages, I'd avoid mentioning my family and not reveal what things they said that were detrimental to my mental health and self-esteem. These family dynamics are an important part of my story, so I want to write about them, not to shame them but to show how religion and family dysfunction can affect people. I'm not about revenge, but exposing hypocrisy and injustice. It felt good to write about getting fired from work unfairly even though I couldn't reveal the workplace.

My mother has indicated that she's done talking to me, and my sisters don't really communicate with me anyway. I accepted the dysfunction in my family years ago, so it doesn't cause me a lot of pain if my sisters and mother refuse to have contact with me. I'd prefer no contact over toxic interactions - where I just get told that everything I do is wrong. What makes me sad is my mother is making the decision that I don't have contact with my father.

I've had awesome support from people that have left messages, comments and emailed me. Their encouragement and support in complete contrast to my family keep me writing. For me, writing is not about my ego or being most popular. Sure it's therapeutic writing, but I know there are a lot of people lonely and isolated out there that are going through what I've been through and might not make it out the other side. I had a man write to me that he decided not to commit suicide after reading my stuff (on another profile where I put stuff I was too embarrassed to write about). Maybe I'll get brave enough to join it all together and share some secrets. Generally I don't write about something unless I've gotten over the pain and can be objective about it. Also that I can handle any criticism (which has generally been from my family and a few extremist fundamental christians - the moderate christians can see my points).

How long have you been blogging and communicating online through other outlets? Have you learned any lessons that you wish you'd known before you started?

I used to excel at essay writing at school and university but didn't write much since. I entered an essay writing competition a few years ago about mental health. I was shy about sharing my story, so I wrote it using a metaphor and in the second person so it wasn't clear whether it was my story or someone I knew well. I won a major prize which gave me confidence to write more. I wanted to start a website sharing what I've learned about food sensitivities, but didn't know how to go about it. My hubby found Hub Pages and suggested I try that as a hobby. I started writing on Hub Pages under a pen-name 'baileybear' over a year ago. I write about any topic of interest to me. Hubpages was an easy platform with plenty of support from other members and I learnt how to do links etc.

I got a lot of positive feedback about my articles on Asperger's and some people encouraged me to set up a website. I 'came out' that I didn't believe in God anymore. I linked it to my Facebook and waited for my family to react. My mother went nuts at me and didn't speak to me for months.

I started my Asperger's Child website on an easy-to-use platform, Weebly and put a blog on one page. I started it just 4 months ago. When I got tired of debating on the HubPages forum about religion, I started a blog on Blogger (to try it out and because I didn't want a 'website'). That was 3 months ago. I don't write on Hub Pages much these days. I am also nearly ready to publish a website about food sensitivities (finally!).

I'm not a prolific blogger - I try to write at least one post on any one of my blogs per week. I have so much to write about, but never enough time to. I get told I spend too much of my spare time on the computer as it is.

Do you have a favorite post you want to share with readers? A post you wish in hindsight that you hadn't done?

My most read article so far is 'Evolution and Unintelligent Design' on Hubpages. I've won 3 hubpages 'awards' for my writing. 
My favourite articles on Hubpages are the series I did on colour in nature (as I like science and art) and Old Man's Nuts. If you've got a strong stomach, you can read "I could have sworn I flushed that" about our toilet dramas. I've only removed one article, about a murderer I knew that went to my family's church. I want to rework it with less identifying details and put on my God Confusion blog. I've got some unpublished at the moment, as I'm transferring the bulk of the content to my new website.

Xanthe's two blogs, God Confusion and Asperger's Child are both on the directory under bloggers with autism. You can find her hubpages here.

Saturday, August 20, 2011

Showcase: aslaspergirl's Rosalind Elsie Franklin

Rosalind Elsie Franklin


"You look at science (or at least talk of it) as some sort of demoralising invention of man, something apart from real life, and which must be cautiously guarded and kept separate from everyday existence. But science and everyday life cannot and should not be separated. Science, for me, gives a partial explanation for life. In so far as it goes, it is based on fact, experience and experiment." --- Franklin

25 July 1920 – 16 April 1958

The more I read about her, the more fire ignited within me to bring recognition to Rosalind Franklin's significant contribution to the helical structure of DNA. Unfortunately, she passed away before the Noble Prize could be awarded to her. James Watson, Francis Crick, and Maurice Wilkins were awarded the Nobel Prize in physiology and medicine in 1962, four years after Franklin died. Her work on the DNA structure led to greater understanding of how genetic information is passed on from parents to children.

I struggled to find a video of Rosalind, so decided to include this instead.

Asperger's Syndrome
When Rosalind was 15 years old, she had chosen science as her vocation and wanted to attend college. Her father strongly opposed it as he wanted her to get into social work. He was concerned that she was choosing a career over marriage and family life. She and her father debated about this for years before he finally accepted that she wanted to be a scientist.

Rosalind had a habit of intensely looking people in the eye while being concise, impatient and directly confrontational. James Watson stated that Rosalind found it very hard to make new acquaintances and was very bad at absorbing social cues. Small talk was awkward for her and she did not willing accept criticism. She did not know how to deal with other people and found it difficult to ask for help. Her relationships with colleagues were strained due to her difficulty in collaborating. She was extremely protective of her research on DNA and refused to share ideas.

In the summer of 1956, Rosalind first began to suspect a health problem. An operation in September of the same year revealed two tumours in her abdomen. She chose not to stay with her parents due to her mother's uncontrollable grief and crying upsetting her too much. Her scientific work continued while she underwent cancer treatment. At the age of 37, Rosalind passed away and J. D. Bernal's words about her death were "Her early death is a great loss to science."

Posted in: Famous people with Asperger's

Thursday, August 18, 2011


Contact: Dawn Crawford                                            For Immediate Release        August 18, 2011


Grants will fund pre- and postdoctoral autism research fellowships

(August 18, 2011—New York, NY)--The Autism Science Foundation, a not-for-profit organization dedicated to supporting and funding autism research, today announced that it had issued a new request for scientific proposals. ASF is inviting applications for Pre- and Postdoctoral Training Awards from graduate students, medical students and postdoctoral fellows interested in pursuing careers in basic and clinical research relevant to autism spectrum disorders. In the past two years, ASF has funded over $400,000 in pre and postdoctoral grants.

"This is one of our most important funding mechanisms" said Alison Singer, president of the Autism Science Foundation. "The pre- and postdoctoral fellowships not only build our knowledge about what causes autism and how best to treat it, but also build our future by encouraging outstanding young investigators to dedicate their careers to autism research."

"Outstanding research is the greatest gift we can offer our families" said Karen London, ASF co-founder. "We are so grateful to all our donors and volunteers who have come together to support autism research and who make these grants possible."

The proposed training must be scientifically linked to autism. Autism Science Foundation will consider for training purposes all areas of related basic and clinical research including but not limited to: human behavior across the lifespan (language, learning, communication, social function, epilepsy, sleep, repetitive disorders), neurobiology (anatomy, development, neuro-imaging), pharmacology, neuropathology, human genetics/genomics, immunology, molecular and cellular mechanisms, studies employing model organisms and systems, and studies of treatment and service delivery. Applications must be received by November 18, 2011.

Additional information about the RFA can be found at

The Autism Science Foundation is a 501(c)(3) public charity. Its mission is to support autism research by providing funding to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to
the general public and serves to increase awareness of autism spectrum disorders and the
needs of individuals and families affected by autism.

Grant applications will be reviewed by members of ASF’s Scientific Advisory Board (SAB) and
other highly qualified reviewers. Current SAB members include
Dr. Joseph Buxbaum (Mt. Sinai School of Medicine);
Dr. Emanuel DiCicco-Bloom (UMDNJ-Robert Wood Johnson Medical School);
Dr. Sharon Humiston (University of Rochester);
Dr. Bryan King (University of Washington, Seattle);
Dr. Ami Klin (Emory University);
Dr. Harold Koplewicz (The Child Mind Institute);
Dr. Eric London (New York Institute for Basic Research);
Dr. Catherine Lord (New York Institute for Brain Development);
Dr. David Mandell (University of Pennsylvania/CHOP);
and Dr. Matthew State (Yale Medical School).

To learn more about the Autism Science Foundation’s grant programs, and to read about
projects funded through this mechanism in prior years, visit

Contact Info:
Dawn Crawford
Autism Science Foundation

Wednesday, August 17, 2011

The help group annual summit

Autism & Learning Disability Conference with Some of the Nation’s Leading Experts
The Help Group will host its annual Summit: Advances and Best Practices in Autism, Learning Disabilities and ADHD on Friday, October 21st and Saturday, October 22nd at the Skirball Cultural Center in Los Angeles. This cutting edge conference, generously sponsored by First 5 California, will feature more than 20 of the nation’s leading experts presenting the latest information to professionals and parents.  For information and online registration visit

Tuesday, August 16, 2011

Beat the Jitters: Danette Schott's "Special Needs Kids and Anxiety Over the Start of School"

Continuing our series of posts concerning back-to-school tips and tools, today's post is by Danette Schott of S-O-S Research.

Special Needs Kids and Anxiety Over the Start of School

by Danette Schott

Your child's response to the start of school will depend on his age and personality. A young child is typically excited to go do what the big kids do. Older kids are usually crabby at the thought of giving up their lazy, lounging summer days and moving back into the grind of homework and exams.
But what about the child with special needs? Although many kids may encounter anxiety over the start of school, it would make sense that a higher number of special needs children face this at an increased level.
Many special needs kids need to experience something many, many times before they can build a comfort level. Your child may be entering 8th grade, but all that means is that they have only started a new school year about eight times. This is hardly enough time for many of our kids to acquire a comfort level.
Also, the last time our kids went through a first day of school was probably about 365 days ago. Enough time has elapsed to have erased this experience from their memory.
So what exactly are our kids worrying about and how can we help alleviate some of their concerns?
  1. New Grade. It doesn't have to be a new school to bring on anxiety. Just a new grade is enough to set off the alarm bells. Kids worry about who will be in their class, will they like their new teacher, and how will things work in general. The best thing to do is to talk with your child. Let your child express his concerns and confirm for him that other kids are feeling similar things.
  2. Academic Difficulties. Kids who struggle academically will obviously worry about whether or not they will be able to handle the new demands. Last year probably seemed hard enough. How can they possibly do more? Reassure your child that she will learn things one step at a time. You are there to help and she will also have the support of her teacher.
  3. Friends. Friendships are difficult for many special needs kids. Some of them take all school year to find a place to fit and then they have to start all over again in the new school year. Provide your child with the guidance she needs to work on her social skills. S-O-S Step by Step ( offers over 100 free resources on social skills that will help you do this.
  4. Growing Up. As our kids get older, they know that life is becoming more complex. Starting a new grade may symbolize that they are growing up and that there will be increased demands. Set some goals for your child. Point at the advantages to being in a new grade, along with the new expectations. Pick a couple of new things that you and your child can work on to move her towards increased responsibility and acknowledging that she is getting older.
As your child gets into her new school year, her anxiety should decrease as she adjusts to the new expectations. If her level of anxiety persists, talk with her teacher and the school psychologist or counselor. Continue to talk with your child and stay on top of her feelings. The more positive things she accomplishes, the more her anxiety will subside.

BioDanette Schott, M.A., is founder of S-O-S Research (, a small research company providing information on "invisible" special needs for parents, teachers, and other professionals, and the editor of Help! S-O-S for Parents blog ( providing free information on the same topics.

Saturday, August 13, 2011

Showcase-Carole Norman Scott from autism45

Today I had the pleasure of meeting a blogger new to the directory.  Carole Norman Scott-who blogs at Autism45  Carole is the mother to Ben who is forty nine years old and also on the spectrum.  I found her blog to be so very personal and informative.  I think that she brings a unique perspective to the directory-and, has much to offer.  I hope that after reading her piece you go on over and check her blog out.

"Journey through the wilderness of autism" by Carole Norman Scott
Living with autism has been quite an experience…one which has brought much sorrow, but thankfully, much joy too! As an adult, our forty-nine year old son Ben, has “mellowed” and reaches out to life in ways we never dared to dream he would or could, back when he was a child…he was so troubled then. He was diagnosed at age four, and was fortunate enough to attend a regular pre-school and kindergarten that had many teachers’ aides. Although he showed signs of high intelligence, he did not relate to the other children or activities as hoped and needed, so was not able to move on in a regular school setting. From age seven to thirteen, he went to The Bost School for Limited Children in Ft. Smith, AR. He made some progress in almost all areas while there, but at puberty his periodic upsets became more than we could physically handle, and it was necessary to find him a “home away from home!” That was absolutely the hardest thing I have ever had to do in my life, but God turned it to Ben’s good…and to ours.
Ben helping with the trimming of the shrubs.
He was just home for a week-long visit, and did so well. His visits have always been about every three months, for a week to ten days at a time, and he has remained a vital part of our family all through the years. When Ben was small, my husband said to me, “Maybe he’ll be your comfort in your old age!” At the time, I thought that to be ludicrous, as the future looked so bleak. It turned out that “prophecy” was right and true though. Now, Ben enjoys his visits at home with us, but has a job and routine provided where he lives that is good for him, and that he is used to. He is able to go everywhere with us…to church and choir practice, to the mall, or to visit family. He is also a BIG help, whether washing the car, emptying the dishwasher, running the sweeper, or helping to grocery shop. His presence IS truly comforting! His behavior is exemplary 99 and 9/10 percent of the time, but it is that other tiny fraction of a percent that keeps him needing help and supervision on a full-time basis (along with not being able to fully understand the “nuances” of life). Although he can talk (say words), frustration can “kick in” for him since he is not able to completely put his wants or needs into words, or converse …and then it’s “Katy bar the door!” That in particular, is what we still can not handle at home. All in all though, he is a fine, brave man who has done very well with the lot he has been given in life, and we are VERY proud of him!
Ben rolling his cars and watching the wheels go around.
At first I questioned God about Ben’s condition, and got downright angry with Him. How could he allow such a thing to happen to an innocent little child? My turmoil built until I was on the verge of a breakdown. (See Christian Testimony Concerning Autism.) It was so hard to observe my little son “slipping away” at the age of two and one-half. It was like watching him die right before my very eyes…yet being helpless to stop the onslaught. One minute, he was talking and learning, and the next he was regressing; repeating only what was said to him in a “parrot-like” fashion. One minute, he was playing and relating, and the next, he was rolling his little cars back and forth, watching only the wheels go around; oblivious to us and all his surroundings.
Ben at age 48
Doctors were unfamiliar with even the term “autism” back in 1966, and we ourselves (having never heard of it) delved through many books, trying to understand in even the slightest way what was happening in our lives. Through it all, I came to the place where I turned to the Lord and gave Ben and his malady over to Him. Since that time, God has been my Rock and Fortress through the storm. He has brought positive things about for Ben that NO ONE else could have managed. My heart goes out to all whose children have recently been diagnosed as autistic. There is no more “baffling” condition. I have written MUCH throughout the years that I am glad to share. After all this time, one thing I now know for certain…Ben may have problems mentally, emotionally, perceptually, and relationally, but SPIRITUALLY…he is whole and healed (See “Child’s Spiritual Potential”). He loves to hear about Jesus, and in the whole scope of life…Spiritual healing really is the most important issue!
PS–Please read the other postings listed above (or scroll down): ”Symptoms of Autism: As a Child, and Improvements as an Adult,” and “The D’s & C’s of Autism,” plus another general post (Archives) about “How Parents Feel” (or how I felt), and “The Child’s Spiritual Potential). I think they will be encouraging to those going through all that right now. If you can not cover it all at this time, please come back again. I hope and pray that it blesses you! CNS
Carole Norman Scott
I am a wife of fifty-three years, mother of three and grandmother of two (all pictured below). I enjoy writing, singing, and photography, and am also a speaker for Stonecroft Ministries. There, I share how trusting Christ has helped me in dealing with autism all these years. That story is listed in the right-hand column of this page (“My Christian Testimony Concerning Autism”). I have also spoken at a teacher’s retreat for “The Little Lighthouse”…a school for handicapped children in Tulsa, OK. I told about Ben’s life and times, which involved a first-hand glimpse into autism and all that it entails. I feel my “calling” has been to be available to those in need…whether it be our autistic son, other family members, or friends. I am also a fourteen year Non-Hodgkin’s Lymphoma cancer survivor (which could be “another” blog).
The Scott Family on our 50th Anniversary (L to R) Jay, Ben, Carole, granddaughter Kelly, daughter, Maureen, granddaughter Shannon & son John
I would also like to mention the Honeysuckle vine in my header photo. In my “carefree” childhood (or so it now seems), I could smell the honeysuckle outside my open bedroom window wafting its sweet fragrance through the still summer night. The photo serves to remind me of who I once was, and still am deep down inside…BEFORE autism…when I so easily felt the innocence of hope and trust in the future. Never, never lose who you were/are APART from autism…no matter what obstacles appear in your present-day journey! Keep that same hope and faith STRONG today! You are STILL that same YOU!



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