Facts About Aspergers and Interview with Julie Clark, author of Asperger’s in PINK

Asperger's in PINK is on
Facebook

“Asperger’s in PINK" is going to be both lighthouse and life raft for parents, giving them something to aim for and the way to get there. Parents of an AS child (whether girl or boy) who are trying to procure a diagnosis or who have a diagnosis but don’t know what to do next, Ms. Clark has provided you with a map. … Thanks to books like this and the parents and professionals who take the time to read them, many more little Aspergirls will have the future they deserve." From the Foreword by Rudy Simone, Asperger's self-advocate and author of Aspergirls and Asperger's on the Job.

Asperger's On the Job
has a forward by
Temple Grandin

A quote from the star of Asperger’s in PINK, Kristina, sets the tone of the book: “I feel like any other ordinary kid and I want to be respected like one.” In her section, Before You Begin, Clark writes about Aspergers (AS):” …both males and females share certain traits…lack of eye contact, inadequate social ability, strict adherence to routine, sensory integration difficulties, lack of empathy, intense interest in a limited number of subjects, rigidity, and a literal way of thinking.” However many people feel that this neurological condition does not have to be cured but has to be accommodated and respected.

Asperger's Syndrome is an Autism Spectrum Disorder (ASD). It is only in 1994 that Asperger’s Syndrome was recognized in the United States and added to the DSM-IV.

In The Pattern of Abilities and Development of Girls with Asperger’s Syndrome by Dr. Tony Attwood - September 1999  we learn: “The boy to girl ratio for referrals for a diagnostic assessment is about ten boys to one girl. However, the evidence indicates that the actual ratio of diagnosed children is 4 boys to one girl (this is the same ratio as occurs with classic autism). Why are so few girls referred for a diagnosis? In general, boys tend to have a greater expression of social deficits, whereas girls tend to be relatively more able in social play and have a more even profile of social skills. Girls seem to be more able to follow social actions by delayed imitation because they observe other children and copy them, perhaps masking the symptoms of Asperger's Syndrome.”

Today in preparation for our tweetchat on The Coffee Klatch (TCK) : http://tweetchat.com/room/tck  Feb. 21st, 9am EST, Julie Clark, artist, mom of a daughter with Asperger’s and author of Asperger’s in PINK kindly answered a few questions.

1. What made you decide to write Asperger’s in PINK?

Julie Clark author is on Twitter

When Kristina was diagnosed, there wasn't very much out there regarding Asperger's - especially anything relating to having (or being) a daughter with it. I wanted to provide a voice for girls on the spectrum, and allowed our story to be that voice, as well as let others learn from our experiences. If our story prompts others to share theirs - to get the conversation going - I'd be thrilled.

2. Who was your target audience?

The hope is that the book would speak to families, to let them know there are other families out there who are walking the same path as they are. They may feel alone, but they are not alone. School professionals and extended family are another audience I'm trying to reach. By personalizing the journey, the hope is that they will gain a view into the world of families like ours, and know that many of us really are trying to do the best by our kids. But we also could use loving, (patient) guidance, and acceptance along the way.

3. How has your book been received?
There are many who have been so kind, and related their own stories to me. Some have expressed that it has been a huge help to know there are other moms (and dads) out there who are walking the same path, even if the steps don't exactly line up. But not everyone relates to the book, and they've made that pretty well known, and that is ok. We each have our own stories, right? What is important is that we choose to learn from each other.

4. Any comments/reviews that made your writing effort worthwhile?
At my first book signing, I had a mom come up, with tears in her eyes. I can't begin to tell you how humbled and touched I was at that moment. As I mentioned, there are those who have quite a differing opinion of what I present in the book. But meeting that mom reminded me of why I wrote the book in the first place, and reenergized me as to the mission behind the book - to increase understanding and awareness of girls on the autism spectrum, and to turn up the volume of the "pink end" of it.

5. Do you find that girls with Asperger’s now have more support in schools than when Kristina started?
That's hard to say. From a purely analytical perspective, knowledge of Asperger's has increased dramatically since then, but the truth is, it is still often misunderstood. So, overall, I'd like to say yes, but I do not think that applies everywhere.

Dr. Tony Atwood in “The Pattern of Abilities and Development of Girls with Asperger’s Syndrome” found that: “Girls are more able to verbalize their emotions and less likely to use physically aggressive acts in response to negative emotions such as confusion, frustration and anger. We do not know whether this is a cultural or constitutional characteristic but we recognize that children who are aggressive are more likely to be referred for a diagnostic assessment to determine whether the behavior is due to a specific developmental disorder and for advice on behavior management. Hence boys with Asperger’s Syndrome are more often referred to a psychologists or psychiatrist because their aggression has become a concern for their parents or schoolteacher.”

Also Dr. Atwood, in his paper about girls with Asperger's, noted that girls "are more motivated to learn and quicker to understand key concepts in comparison to boys with Asperger's Syndrome of equivalent intellectual ability." As such, he predicted that girls would fare better in the long run, if they're properly diagnosed.

There we have it – the magic words- ‘properly diagnosed', what Julie Clark and countless other parents are working so hard to receive. Julie says of the official diagnosis: “The combination lock opened, the fog lifted, darkness no longer enveloped us. .. At last, we knew what we needed to know to help Kristina grow."

We hope Julie’s book, our posts and The Coffee Klatch sessions will motivate parents to continue their struggle to but a name to their child’s unique behaviors and open the eyes and heart of others to accept and respect all individuals. As Julie Clark wrote: " What I am saying is that "the village" contributes to the growth or stagnation of all of us."

Purchase Asperger's in Pink at Future Horizons
Purchase Asperger's On the Job at Futrue Horizons

Where to connect with Julie Clark:
*JulieClarkArt Artisan Studio at ArtFire
*JulieClarkArt.blogspot.com
*Asperger's in Pink on Facebook
*I'm on twitter
*Julie Clark Art, artisan studio on Facebook

Related Posts:

*Asperger's in PINK by Julie Clark ~ Book Review 

*Asperger's On the Job by Rudy Simone ~ A Review 

*Three Book Reviews Dealing With Guides For Kids With ASD

*Shonda Schilling's Frank Account of Son With Asperger's Syndrome

*Jodi Picoult's House Rules

Asperger's in Pink by Julie Clark ~ Book Review

Review by Gavin Bollard

“One of the hardest things about raising a child with Asperger’s is the feeling that our daughter has something invisible. … It’s the old, old story of judging by appearance. It’s the old, old ending, of the cover not fully representing the book,” writes Julie Clark in Asperger's in Pink ~ A Mother and Daughter Guidebook for Raising (or being) a Girl with Asperger’s.

Twitter

Julie Clark, a writer, an artist, and a mom explains in detail the adaptations, alterations and perseverance needed to win their daily battles in raising Kristina with Asperger’s Syndrome (AS). These battles were sometimes with their immediate family, their friends, medical and school systems and sometimes with  Kristina or even with their own insecurities.

Julie Clark will be joining Hartley Steiner and Lorna d'Entremont on the The Coffee Klatch ~ Twitter tweetchat Feb. 21 at 9am EST. Join us please!

The foreword by Rudy Simone, Asperger's self-advocate and author of Aspergirls and Asperger's on the Job, applauds Kristina’s mom for her tenacity in enlisting the aid of professionals, in documenting the progress of her child’s education and care and most importantly in getting the all important diagnosis.

Part of the title of this book is “A Mother and Daughter Guidebook for Raising (or being) a Girl with Asperger’s.” Julie Clark walks us through the lengthy process of getting the proper diagnosis and blames this partly on the fact that her child is a girl. In her forward, Rudy Simone also upholds the fact that the female gender often goes undiagnosed and even receives multiple misdiagnoses. This results in not having access to the proper care and support.

A delayed diagnosis leaves the family struggling to prove that their child’s unique behavior is not due to bad parenting or willful misbehaving. Clark points out that one of the most difficult aspects of their journey has been the feeling of being misunderstood and under a microscope as a family unit.

Clark advises, in a Pink Pearl to Everyone, to throw out the cookie cutter! Do not expect girls with AS to mimic boys with AS. For that matter, don’t expect girls with AS to mimic their neurotypical counterparts…”

Even though this book fills the need for a resource for families and educators of girls with Asperger’s, it is also very beneficial for all parents of a special needs child because many aspects of the Clark’s family struggle apply to all. These parents will learn from Kristina's parents as they sift through the EAS (Educational Alphabet Soup) IEP, 504, PAT, FAPE, CSE, OT…

Unfortunately her dealings with the educational system, except for a few caring, capable individuals, make me shudder. Clark is Thankful for: “A 5th grade teacher, who taught more, gave more, than anyone else, and who has bestowed a lifelong positive impact on one little, super-special girl-and her parents.”

We read that as her daughter gets older the academic and special services component of school was solid but the social component crumbled as the days of knowing Kristina was a bit different had unfortunately begun. Like for so many of our special needs children, Clark says it so simply:“ Watching your daughter bloom in October, only to wilt in Spring in unbearable.”

I agree with the author on the topic of bullying. The emotional bullying girls can dish out is rather nasty and long lasting; more psychological than physical. The wish of many parents is for their child to find a true friend like Emma was for Kristina.

You will easily relate to Julie’s explanation on how they needed lots of perseverance, patience and prayers to deal with friendships, play dates, invitations to parties, school group projects, playground and lunch time friends and family outings and vacations. Follow the Clarks, armed with Social Stories in pockets, trying to interest Kristina in extracurricular activities to learn to interact with peers.

The chapter, Holding the Marriage Together, will make you realize how important it is to be a helpmate to your spouse, to make time to be together and to be a team dealing with the added stressors of a special needs child.

Interview with Danett Schott
S-O-S for Parents

After having read Asperger’s in PINK, you should be a stronger person, a better advocate armed with more knowledge and hope. A person, like Julie Clark, with a light at the end of your tunnel and with no regrets because you have figured out what is really important in life and with all your being you work to make this happen:  “I so hope, with all my being, that she will grow up to be happy, healthy, successful and loved by others.”

Asperger’s in PINK is divided in four sections entitled, The Diagnostic Process, School, Community and Day to Day. Each section has short chapters that all begin with an interesting quote by Kristina and end with Julie’s Pink Peals for various people like caregivers, her husband, the couple, the extended family and other moms. Then she has what she is Thankful for in regards to the topic she covered in the chapter. The last part of each chapter is entitled Inside the Bubble, a moving story about an event that her family experienced. I especially loved Holidays Are Hard where she tells us the difficulties of Halloween.

The comprehensive index allows parents to use this book, after their first reading, as a resource that they can return to when they need guidance or simply for a ‘misery enjoys company’ read! Also this book makes a  great gift for family members, friends and educators so that finally you can all be on the same page!

Asperger's in PINK by Julie Clark

Binding: Paperback

Pages: 273

Price: $14.95

Purchase: Future Horizons

Where to connect with Julie Clark:
JulieClarkArt Artisan Studio at ArtFire
JulieClarkArt.blogspot.com
Asperger's in Pink on Facebook
Twitter 
Julie Clark Art, artisan studio on Facebook

Related Posts:
*Facts About Aspergers and Interview with Julie Clark, author of Asperger’s in PINK
*Asperger's On the Job by Rudy Simone ~ Book  Review

*Shonda Schilling's Frank Account of Son With Asperger's Syndrome

*Jodi Picoult's House Rules

Passed Toddlerhood and Still Mouthing ~ Guest Post ~ by Emma Apple

If you’re like me and you have a child that needs a lot of oral stimulation, you’ll appreciate the Kid Companions Chewelry. I’ve been looking for something for my daughter to chew on for months! The other kind of chewelry I’ve found is either uncomfortable or unattractive or not safe for kids with teeth.

In hind sight, it started when Madam was a baby. She was what Dr. Sears calls a "High Needs Baby". For the first two years, she would scream if her father or anyone else held her. From the start, she would wake up crying 5 minutes after being put down to sleep and she wanted to breastfeed constantly.

The first indicator that something might be going on with Madam, aside from the awful screaming she'd use to communicate despite her language being advanced, was that she didn't grow out of the mouthing stage.

By the time she was 3, there were several early signs of Autism, with the chewing/sucking/biting on everything being the most alarming. When she chewed through an electrical wire and put a shard of glass in her mouth, we knew it was time to get help.

She was eventually diagnosed with Aspergers and Sensory Regulatory Disorder. We tried several appropriate alternatives for her to chew: straws, teething toys, washcloths... the straws helped the most but none of them made a significant difference and she craved a variety of textures.

Our furniture is a mess from being chewed for so long with pieces of wood, faux leather and foam missing. All her plastic animals have legs, tails, mouths, fins etc. chewed off and the ends of the beds have teeth marks all over them.

One day I stumbled on a giveaway for a kind of Chewelry I'd never seen before. The ones I'd seen prior had been either not appropriate for kids with teeth (which seemed to defeat the purpose) or unattractive and uncomfortable looking to wear.

I entered the giveaway (with as many entries as was allowed) and Madam won her beautiful Pink Heart shaped Kid Companions Chewelry. She was absolutely over the moon when she got it. Madam doesn't like to wear it as a necklace for long but often goes to it and always when reminded. She sometimes has it in her pocket or next to her on the table and if she is feeling very chewy she'll put it on around her neck and use it. I just can't tell you how wonderful and genius I think this is! Exactly what I was looking for!

It is a couple of months later and I cannot recommend this product enough! Madam’s chewing has been significantly reduced and her nails have grown. We've tried so many things to try and stop her biting her nails and nothing ever worked. A few days ago, we were able to cut her nails for the first time since she was a baby and she is proudly wearing her yellow nail polish for only the second time!

She still chews inappropriate things but is often able to redirect herself and often gets her chewelry before an activity where she tends to chew (i.e. coloring) without being prompted.

We love having this tool for her that involves several textures: hard plastic, softer rubber and the cotton lanyard. It is a tool that is readily available and easy to take with us. Her chewy, pink heart is pretty (perhaps most important to a little girl who loves Pink) and has had a positive impact on the entire family. I'm sure they aren't this wonderful for every child since needs vary so greatly but, like I said, I simply cannot recommend them enough!

Links to Emma Apple:

Editor at http://www.muslimasoasis.com/  

Advocate at http://www.bluehijabday.com/

Designer at http://www.yellowpixeldesigns.com/

Pierrette and I wish to thank Emma Apple for this guest post. We appreciate her comments and photos that will help other parents realize that some children must be provided with a safe, efficient alternative to inappropriate mouthing to satisfy their need for oral stimulation.

Related Posts:
*Why Do Kids Bite Their Nails and What To Do About It
*What Goes In a Personalized Sensory Box

*Product Innovators Launch Unique Sensory Tool for Special Needs Youth
*Fidgets Toys or Tools
*Chewing and Biting Tip ~ Chewing Is a Form of Moving
*There Is a New Kid Companion On Our Block

Behavior Solutions for the Inclusive Classroom: See a behavior? Look it up! ~ A Review

Adults working with children will often have a child or children diagnosed with Learning Disability, Autism, Aspergers Syndrome, ADHD…among the group. This book is a must-have guide for these adults to find how to most effectively help these Special Needs children to be happy and productive in these inclusive settings.

Small but mighty is what this handy, easy to use resource brings to mind. In a few hours a classroom teacher, homeschooling parents, special needs caregiver/aide, day care workers, early intervention teacher, babysitting grandparents …can go from cover to cover. When I arrived at the last page of Section Four, I was disappointed I had reached the end just like how you feel after a great movie or exciting hockey game seems to end too soon.

 The authors have used language that all can understand. It is not technical, not filled with acronyms, not professional jargon but great on-the-spot, diplomatic solutions to make better the life of a child, his classmates, his parents and his teachers.

After having been read once so you know the many behaviors and solutions included, this book belongs close at hand to be consulted numerous times. The authors found a very simple and effective format which they use throughout the book. The behavior and possible causes of the behavior are explained clearly in less than 12 lines on one page and the next page or two have bullet form solutions. These solutions are practical, tactful and immediately doable without expensive, extra teaching tools. The solutions can be implemented by a busy person with other children under their care.

The detailed Table of Contents and efficient 11 pages of Index makes it a breeze to find solutions to your problem. For example, you have a child who is constantly chewing his clothes making them soggy and full of holes…What to do? Look in the Index. Find Chewing with its two subheadings:

Behaviors, 13 “One coping mechanism for self-regulation used by students is to chew on their shirts, causing holes…Oral input is organizing and calming (as when an infant sucks on a pacifier, or an adult chews gum). It is important to provide them access to that in a way that is socially acceptable and age-appropriate.”
Solutions, 14-15 Three solutions are given one of which is: “For younger students (Kindergarten and below), it is possible to use a length of aquarium hose or Chewy-Tubes for the student to chew on. Students this age are less socially aware, and there is less of a stigma on the child who uses such a devise.”

To bring this chewing topic to a close, the authors have added as they do in other parts of the book also, suggestions or guide lines to help the reader make the right decisions. This one reads: “…As educators, we must not let established policy be a substitute for wise and successful decision-making.” Then they touch on the ‘NO-FOOD’ policy in many schools that should be adjusted for the benefit of the student with a disability.

The following are the headings for the four sections and some of the subheadings :
Section One: Movement Issues
*Arm- & Hand-flapping
*Arm-swinging
*Breaking Pencils and/or Crayons
Section Two: Avoidance and Retreat Behaviors
*Avoiding Physical Contact or Messy Activities
*Covering Ears
*Hiding or Running Away When Upset
Section Three: Difficulty with Routine and Academics
*Difficulty with Carpet Time
*Difficulty with Lining Up
*Difficulty Starting Assignments

Section Four: Social-Emotional Issues

*Saying Rude or Inappropriate Things

*Clothing Issues

*Difficulty Accepting Criticism

This well planned reference will be one that you will be recommending to parents and co-workers. Hope it is also on the shelves of your school’s resource reading corner.

Meet the authors:
Beth Aune is a licensed, registered Occupational Therapist who currently has a private practice as a pediatric occupational therapist in the Coachella Valley area.

Beth Burt became an advocate because of her experience with her own children, one with an autism spectrum disorder (ASD) and the other with a learning disability. She has over thirteen years of experience collaborating and advocating on the behalf of students with ASD and other disorders.

Peter Gennaro is currently the Director of Special Education for the Alvord Unified School District in Southern California. He served as Special Education Coordinator and as Program/Inclusion Specialist prior this.

Author(s): Beth Aune, Beth Burt, Peter Gennaro
Binding: Paperback
Education: A Handy Reference Guide that Explains Behaviors and the Solutions Associated with Autism, Asperger's, ADHD, Sensory Processing Disorder, and other Special Needs
Pages: 151
Price: $14.95
Publisher sold here: Future Horizons Inc.

What has been a good strategy used to make a Special Needs person you know feel happy and be productive  in inclusive settings?

Related Posts:
*How Do I Teach This Kid? ~ Book Review
*Learning In Motion 101+ Sensory Activities for the Classroom ~ Book Review

*Danceland CD : Fun Songs and Activities to Improve Sensory Skills ~ Review
*28 Instant Songames ~ Review

The Coffee Klatch Explains Nov.1st 2010 Communicate to Educate

I am reposting an explanation from The Coffee Klatch on its decision to hold a 24 hour chat session to Communicate to Educate on Nov. 1st. More about The Coffee Klatch and its many facets here


Special - "Shut Down For Autism" 11/1/10 is raising awareness by asking everyone to not go on any social media sites that day. We admire any effort to bring awareness to Autism however, many many many people living with Aspergers have told us they disagree with this effort - they feel that communication is key and although the premise was to make neurotypicals understand the frustration from lack of communication it defeats the purpose. We want to acknowledge and respect the wishes of all of our followers. It is a personal choice, some of you will shut down and we respect that and hope that as you do you let people know why - some of you prefer not to - therefore - we encourage you to not only speak but speak loudly, if that is your choice, here on The Coffee Klatch for a 24 hour open chat to be moderated by people who understand, Adults with Autism, Parents of children on the spectrum - and some respected and admired Autism Advocates. Let's bring those who want to be educated over to The Coffee Klatch instead of shutting them down, lets offer those who have a voice for Autism do what we do best on The Coffee Klatch - Educate. Starting at 9am est on Monday November 1st.

We have the utmost respect for all of our followers and understand the effort for "Shut Down for Autism" I think any awareness of Autism is a great thing, however, as I stated many adults on the spectrum feel that they have earned their right to communicate and feel that although it is great to spotlight Autism, to take away communication is not the way to go about it. I initially thought Shut Down was a great idea as well, I had planned on not having a chat session that day on The Coffee Klatch. I feel now that I, not ever having communications issues in myself or children did not understand the feelings of many and want to offer an option. "Instead of shutting down" - speak loudly". I am offering The Coffee Klatch Chatroom for a 24 hour open forum and am looking for people I respect in the community to help moderate an hour or two of their day any time day or night to jump on our chat and talk and educate others about the voice of autism.

--

Marianne Russo

Founder of The Coffee Klatch

www.TheCoffeeKlatch.com