Raising a Child with Autism: What I Wish I Knew Sooner

Today, we hear from Teri Book, a nurse practitioner at The Center for Autism  & Neurodevelopmental Disorders. Teri shares what she’s learned as a nurse caring for children with autism, and also as a mother of a child with autism.

I have learned many things in my 12 years at the center, as well as from raising my daughter, who was diagnosed with autism at age 7.

The most profound thing happened on my first day at the center, when I met a mother who was also a nurse. She had a child who had been recently moved to a county program to help manage her behavior.20130425_0560

What struck me about this woman was how normal she was. For the longest time, I felt that it was somehow my fault that my child was different. I thought that if I was a better parent, or if I did things differently, she would be more like other children. In my heart, I believed that I was a lesser person because I couldn’t produce a “normal” child.

In this and other interactions over the next few months, I came to recognize how resilient parents of children with autism are. I began to realize that I belonged to a group of intensely dedicated individuals who face challenges on a daily basis. This began my awareness and appreciation that continues to this day for the strength and character of the parents I work with every day. Let me share a little of what else I’ve learned as a parent and professional:

  • Love means accepting
  • Be patient, both with one’s self and with others
  • One should be careful not to live their lives based on society’s idea of what it means to be successful
  • What doesn’t kill you does make you stronger
  • We are all much stronger than we realize when we are put to the test
  • Kindness is a minimum criteria, it is so easy to give but often seems in short supply

I appreciate others in a way I never would have without my daughter, parents I’ve met at The Center for Autism and the physicians and staff here. Today is a good day to be happy, no matter what your circumstance, because that’s all we really have.

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Helpful Holiday Tips for Children with Autism Spectrum Disorders

The holiday season is a joyful time of the year, but it also can be stressful for kids with autism spectrum disorders (ASD). Preparing and planning early for the holidays can help you relieve some of the holiday stress. Here are a few helpful tips from our partner, The Center for Autism & Neurodevelopmental Disorders.

Provide concrete information for your child
• Provide a visual schedule of each day’s expectations. Include start times and end times.
• Use your smart phone or iPad when possible to find free apps including visual timers, “First This Then This” schedules, and personalized “social stories.”
• Explain what is both expected of your child and not expected.
• Provide opportunities to reward your child for expected behavior.

Provide information visually
• Take pictures of relatives and friends you will visit, and practice names.
• Video modeling is considered an evidenced-based way to teach your child. Take videos of how to unwrap a gift the right way, thank a family member, or greet new people. Role play with your child and practice ahead of time.
• Use pictures to help your child communicate or make choices of what they would like to have or say.

Reduce anxiety
• Compile a list of activities that can help your child fill his or her time wherever you go.
• Use rehearsal and role play to give children practice ahead of time in dealing with new social situations, or work together to write a “social story” that incorporates all the elements of an upcoming event or visit to better prepare them for that situation.
• If you are going to visit family or friends, make sure there is a quiet, calm place for retreat.
• Try to relax and have a good time. If you are tense, your child may sense that something isn’t right.
• Don’t shield your child from the extended family. Family members need to understand the challenges you face.

By Kelly McKinnon, MA, BCBA, Director of Behavior Intervention at The Center for Autism  & Neurodevelopmental Disorders

The Center for Autism  & Neurodevelopmental Disorders is located at 2500 Red Hill Ave, in Santa Ana. For more information, please call 949-267-0400 or visit www.thecenter4autism.org.

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Autism Resources Grow to Meet the Needs of OC Children

Autism continues to be one of the most prevalent topics in our community. While autism spectrum disorder (ASD) is not new, more children than ever are classified as autistic, partly explained by improved diagnosis and awareness. While there is no cure for autism, research shows that early diagnosis and intervention improve chances that the child will benefit from treatment.Check out the Q&A below to learn more about this unique condition, and where you and your family can go for support and treatment.

What is autism and how common is it?
According to Autism Speaks, the world’s leading autism science and advocacy organization, Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. Currently, one in 88 children is estimated to be on the autism spectrum.

Over the last five years, scientists have identified a number of rare gene changes, or mutations, associated with autism. A small number of these are sufficient to cause autism by themselves. Most cases of autism, however, appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development.

What are the signs of autism?
The following red flags may indicate your child is at risk for an autism spectrum disorder.

•No big smiles or other warm, joyful expressions by 6 months or thereafter
•No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
•No babbling by 12 months
•No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
•No words by 16 months
•No meaningful, two-word phrases (not including imitating or repeating) by 24 months
•Any loss of speech, babbling or social skills at any age

If your child exhibits any of the above signs, please don’t delay in asking your pediatrician or family doctor for an evaluation.

How is autism diagnosed?
If you are concerned your child is at risk for autism, please speak with your physician. He/she may recommend setting up an appointment with a specialist, who can evaluate your child.

Where can Orange County families go for treatment?
In partnership with UC Irvine, Chapman University College of Educational Studies and CHOC Children’s,  The Center for Autism & Neurodevelopmental Disorders (formerly For OC Kids) is a leader in education, assessment, diagnosis and care coordination for children with autism and other neurodevelopmental disorders. In a first-of-its-kind public/private partnership, the Thompson Family Foundation and the Children and Families Commission of Orange County in 2012 provided $14.8 million to create a new vision, led by Dr. Joseph Donnelly, pediatric neurologist and director of The Center for Autism & Neurodevelopmental Disorders. This investment allowed The Center to expand from a medical focus to a multi-disciplinary practice, offering a full range of treatment services.

What types of treatment does The Center offer?
The Center offers a complete range of high-quality diagnostic and treatment services to children, adolescents and young adults from birth to age 22, including Applied Behavior Analysis (ABA), social skills classes, psychology, psychiatry, occupational therapy, speech and language therapy, and a wellness program. It strives to serve all children and families, and accepts most types of insurance.

What types of resources does The Center offer for parents?
The Center offers a multitude of parent education classes and support groups, including monthly technology workshops, individualized education program (IEP) planning seminars, and an autism education series. Additionally, The Center is home to F.A.S.T. (Families and Schools Together), a unique program designed to build bridges with schools and help parents navigate the educational system.

The Center for Autism & Neurodevelopmental Disorders is located at 2500 Red Hill Ave, in Santa Ana. For more information, please call 949-267-0400 or visit www.thecenter4autism.org.

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Helping Your Child Understand Autism

autism_awarenessribbon-smallApril is National Autism Awareness Month. Chances are your child knows someone – a classmate, a friend’s sibling, etc. – who has autism spectrum disorders. Hopefully by helping your child understand what autism is, you will help to alleviate any fears and answer any questions he may have. And, perhaps, help him show more patience and kindness to a peer who has autism or another related disorder.

What Does Autism Mean?

People usually call it autism (say: aw-tih-zum), but the official name is autism spectrum disorders. Why? Because doctors include autism in a group of problems that kids can have, including Asperger syndrome and others. These problems happen when the brain develops differently and has trouble with an important job: making sense of the world.

Kids with autism often can’t make connections that other kids make easily. For example, when people smile, you know they feel happy or friendly; when people look mad, you can tell by their face or their voice. But many kids who have autism spectrum disorders have trouble understanding what emotions look like and what another person is thinking. They might act in a way that seems unusual, and it can be hard to understand why they’re doing it.

A kid with an autism spectrum disorder might:

  • have trouble learning the meaning of words
  • do the same thing over and over, like saying the same word
  • move his or her arms or body in a certain way
  •  have trouble adjusting to changes (like trying new foods, having a substitute teacher, or having toys moved from their usual places)

Imagine trying to understand what your teacher is saying if you didn’t know what her words really mean. It is even more frustrating if a kid can’t come up with the right words to express his or her own thoughts, or tell a parent what he or she needs or wants. Sometimes this can make a kid very upset and frustrated. You can be a friend to a kid with autism by showing a little kindness and patience. If you have any questions, speak to your parents or your teacher.

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CHOC Using Stem Cells To Study Impact Of Autism

Last year, CHOC Children’s Research Institute received a National Institutes of Health (NIH) Research Grant to generate, investigate, and store neural stem cells derived from skin cells, donated by children with autism. The program is designed to provide an important new tool for studying the impact of autism on the developing brain.

Check out what Philip H. Schwartz, Ph.D., principal investigator on the NIH grant and founding director, National Human Neural Stem Cell Resource at CHOC, has to say about this exciting research:

Q: How unique is this study, and what do we hope to learn from it?
A:  By using easily obtainable skin cells, we can now generate patient-specific brain cells in the laboratory. This allows us to study what is going wrong in the brain of a patient with a genetic disease such as autism without ever having to touch their brain, a huge leap forward if there ever was one!

Only a very few laboratories are doing this and, in fact, the National Institutes of Health is convening a special meeting of scientists, including me, this October to discuss the best ways to move this new and exciting research forward.

Q: What are neural stem cells and how are they obtained?
A:  Neural stem cells are immature brain cells that can divide many, many times and can mature into all the types of brain cells that make up our brains; all the brain cells that make up our entire brain are derived from neural stem cells. We can obtain these cells from the brain itself during surgery or after death or we can derive these cells, using modern technology, from skin rather than the brain.

Q: How will this study benefit patients and families?
A:  Because we can now make brain cells from skin, we can now study brain cells from many patients simultaneously. This will allow us to directly probe what is wrong with these cells and, as a result, come up with new ways to diagnose and treat these very prevalent brain diseases.

Importantly, autism seems to be a class of diseases rather than a single disease and because we can now make patient-specific brain cells from the patient’s own skin, we may be able to tailor therapy to the patient.