Missionary Renegade: A letter from a teenage sister for Friday, 19 May 2017 - Autism Speaks in New York, New York, United States

A letter from a teenage sister for Friday, 19 May 2017 - Autism Speaks in New York, New York, United States

E-Speaks Newsletter

This week we focus on blogs, resources and information for siblings.
Books for siblings

Many parents and caregivers have used books to start or continue conversations about how siblings may be feeling about having a brother and/or sister that has autism. Our Resource Library provides an array of books specifically for siblings. Read More

General Information on Autism	For Professionals
Diagnosis/Early Intervention	For Parents
Therapeutic/Behavioral Interventions	For Siblings
Medical/Biomedical/Diet Interventions	For Peers
Social Skills/Other Interventions	Family Experiences
Adolescents and Young Adults	Books for Children
Other Family Books	Adults with Autism
Asperger's Syndrome	Books in Spanish
Special Education Legal Rights

General Information on Autism
41 Things to Know About Autism
by Chantal Sicile-Kira
Answering Autism from A to Z: an eBook by Karen J. Crystal
Autism by Stuart Murray
Autism Answer Book: More Than 300 of the Top Questions Parents Ask
by William Stillman
Autism: How Modern Psychiatry Fumbled the Origins of Mental Illness
by Dan Agin, PhD
Autism Aspergers: Solving the Relationship Puzzle--A New Developmental Program that Opens the Door to Lifelong Social and Emotional Growth
by Steven E. Gutstein
Autism and Asperger Syndrome: Busting the Myths
by Lynn Adams, PhD
Autism: Advancing on the Spectrum: From Inclusion in School to Participation in Life
by Melissa Niemann and Danuta Highet
The Autism Book: Answers to Your Most Pressing Questions
by S. Jhoanna Robledo, Dawn Ham-Kucharski
The Autism Encyclopedia: 500+ Entries for Parents and Professionals
by John T. Neisworth, Pamela S. Wolfe
Autism Journey Guide
by Talk About Curing Autism (TACA)
The Autism Sourcebook: Everything You Need to Know About Diagnosis, Treatment, Coping, and Healing--from a Mother Whose Child Recovered
by Karen Siff Exkorn
Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger's Syndrome, Pervasive Developmental Disorder, and Other ASDs
by Chantal Sicile-Kira
Autism Spectrum Disorders from A to Z: Assessment, Diagnosis... & More!
by Emily Doyle Iland, Barbara T. Doyle
Autism Spectrum Disorders: What Every Parent Needs to Know American Academy of Pediatrics
Autism Spectrum Realities
by Gary W. Studebaker, Ed.D.
The Age of Autism: Mercury, Medicine, and a Man-Made Epidemic
by Dan Olmsted, Mark Blaxill
Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure
by Paul A. Offit, MD
Deadly Choices: How the Anti-Vaccine Movement Threatens Us All
by Paul A. Offit, MD
A History of Autism: Conversations with the Pioneers
by Adam Feinstein
Living Along the Autism Spectrum: What Does It Mean to have Autism or Asperger Syndrome?
by Stephen Shore, EdD and Robert Naseef, PhD
moderated by Daniel Gottlieb, PhD

Family members and friends of individuals with autism are presented with many joys and many challenges throughout their lives. Learning that a family member or friend is affected by autism is a powerful moment. People respond with a wide array of emotions: shock, grief, fear, denial, anger, acceptance, and many more. Many begin to feel their lives will never be the same. Parents can feel overwhelmed, siblings can feel isolated, grandparents can feel helpless, and friends can feel apprehensive.
In an effort to ease the fears of and provide encouragement to all people with individuals with autism in their lives, Autism Speaks has created 4 support tool kits, each designed specifically for the following groups:
Parents
Siblings
Grandparents
Friends
The purpose of each kit is to help teach family members and friends more about autism and its effects on families, and provide resources and support to enable them to lead happy and successful lives with their loved ones with autism.

A Parent's Guide to Autism

This tool kit is specifically designed for parents of children diagnosed with autism. This Tool Kit will help parents:

Learn about autism and how it may impact your family.
Find strategies and resources for raising a child with autism.
Find support so you don't feel alone or isolated.
Reduce the negative impact of the diagnosis on your family.
Promote a positive future for your child and family.

Click here to read A Parent's Guide to Autism.

A Sibling's Guide to Autism

This tool kit is for anyone who has a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.
Click here to read A Sibling's Guide to Autism.

A Grandparent's Guide to Autism

This tool kit is designed specifically for grandparents of people who have been diagnosed with autism. This tool kit will help grandparents to:

Learn about autism and its impact on your family.
Discover ways to support your children who may be struggling with their child's autism diagnosis.
Find out ways to develop the best relationship you can with your grandchildren.
Feel support and encouraged so you do not feel lonely or overwhelmed.

Click here to read A Grandparent's Guide to Autism.
Clic aquí para Autismo: Una Guía Para Abuelos.

A Friend's Guide to Autism

This tool kit is specifically designed for friends of families affected by autism. This tool kit will serve as a guide to help you learn:

More about autism.
How your friend may be feeling if this is a new diagnosis.
How to support your friend.
How you and your family can interact with and support the person with autism.

Click here to read A Friend's Guide to Autism.

For years Brennan (who is only a year older than his brother) has had to hold it all together. He loves his brother and never wants to say when his feelings are hurt or when he is angry his brother takes something from him or hits him, because he knows it's not his brother's fault. But that doesn't mean it's easy. Read More
This blog is from Mandy Farmer who writes a blog called From Motherhood where she writes about raising her three children, one who has autism, and her military family life. Mandy recently released a book with her son called, "What About Me? A book by and for an Autism Sibling.

A little over a year ago our eldest son started having a lot of behavior problems both at home and at school. He has always been our easy going kiddo and definitely the most mellow of our bunch, so imagine my surprise when I was called in for a meeting with the principal, the kindergarten teacher and a counselor to address out of control behaviors and outbursts that were occurring in the classroom. What?? We had been seeing some emotional moments at home, but most of them seemed reactionary to living with a brother on the spectrum who has a lot of behaviors himself.

As I talked through the meeting with the school (a meeting at which they recommended therapy for him) it dawned on me that I was so busy tending to our autistic child's needs and behaviors that I had lost sight of how hard living in our home must sometimes be for a child.

"Are there problems at home?" they asked.

Wow was that a loaded question. I explained, "Ever since the last move our autistic child's behaviors have been pretty bad. There are a lot of mornings before school that he screams the entire time I am trying to get him ready. He will go after me. He will sometimes go after them. Going from that to walking through the school doors ten minutes later, that's probably pretty hard..." my voice cracked.

His teacher spoke up, "He talks a lot about needing to be perfect and needing to do everything the right way. He seems to get down on himself a lot. His emotions lately have just been right at the surface and it takes very little to bring him to tears."

"He's definitely had to grow up fast and be the bigger person all of the time. But he's usually such a happy kid. I don't even know what to say. We'll talk to him."

I didn't know how much to divulge. I was definitely being honest that I didn't know what had changed, but maybe that was the problem. Nothing had changed. For years Brennan (who is only a year older than his autistic brother) has had to hold it all together. For years he has had to go into another room and lock the door when his brother is having a meltdown and trying to go after him. For years therapists have come over multiple times a week to play with just his brother. For as long as I can remember he has done everything in his power to keep the peace. Even if that meant giving up his favorite thing or missing out on something he really wanted to do to avoid a public outing nightmare. Even with all of that, I really thought he was handling it in stride. He talked about knowing his brother is different and that he needs more attention and that sometimes he has different rules. He always said he understood when birthday parties had to go a very specific way or when we couldn't watch the movie he wanted because his brother couldn't stand the sounds in it.

After talking to the school and an outside therapist I realized that although Brennan was talking a good game, there is only so much of that that a seven year old can truly grasp. He knows things have to be different, but he won't really grasp the depth of why his brother is the way he is for quite some time. And all of this time the resentment, anger and sadness about everything he has seen and everything he goes through have been simmering right under the surface. He loves his brother and never wants to say when his feelings are hurt or when he is angry his brother takes something from him or hits him, because he knows it's not his brother's fault. But that doesn't mean it's easy.

As I was looking for resources to help him understand everything he was feeling, I realized there isn't much available for autism siblings. I saw a number of books that explained autism to siblings, but none that worked through these very real issues he was having and that I assume many autism siblings feel.

After realizing how much all of this was weighing on Brennan he started counseling and he and I sat down and talked. We talked about times he has been sad about having to leave something he was enjoying doing because his brother was upset. We talked about how it makes him sad when he sees his brother hit me. We talked about how far his brother has come and how now playing together is a lot easier than it used to be. He mentioned that he loves helping his brother and trying to make him feel better when he is upset. I asked him if he wanted to write down some feelings. I told him that it always makes me feel better when I do.

I looked at what he wrote and some of it broke my heart and some of it made me very proud. I told him there were a lot of other kids probably feeling the same way, but maybe they need a way to talk about it too. He was very open to the idea of sharing his thoughts and feelings about being an autism sibling, but as we worked out some of the harder memories there were some tears. At one point he said talking about certain memories was too painful and he got up and walked away. He later came back to it and said he knew it was an important part of his story.

We formed his experiences and memories into a beautifully illustrated story about the up and downs of being an autism sibling. As our illustrator Emily Neff brought the story to life, I couldn't believe how moved he was by his own story. We kept our message positive, but we didn't shy away from the hard stuff. We hope that What About Me? will help a lot of families that work everyday through the realities of living in an autism household but always try to see the beauty in being an autism family. We are incredibly proud of Brennan for the person he is and the person he will be and much of that has been shaped by being an autism sibling. We see in him compassion and empathy well beyond his years, and I am so grateful he was willing to share his story to help other kids.

Click here to download Autism Speaks Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

Explore more:

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.

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Missionary Renegade

Saturday, May 20, 2017

A letter from a teenage sister for Friday, 19 May 2017 - Autism Speaks in New York, New York, United States

A Parent's Guide to Autism

A Sibling's Guide to Autism

A Grandparent's Guide to Autism

A Friend's Guide to Autism

Explore more:

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