Unraveling the Myths of Autism

Adapted from mentalhealth4muslims and guest posted by Maryam Kazi

“Autism is not a puzzle, nor a disease. Autism is a challenge, but certainly not a devastating  one.”

Trisha Van Berkel

Autism is a very common issue in the United States.  Many parents feel that they are at a loss because they don’t understand what it is.  Recently, there was  a tragic story of a mother from Texas who killed her two autistic children because she wasn’t able to cope with their condition.  Clearly, there was a misunderstanding of what the children may have been experiencing and how the responsible adult in their lives was interpreting their state.  It is important to make sure that our community is confronting these realities instead of living in denial.  We should encourage parents to take these matters seriously and seek treatment and not worry about shame or social pressure.  Many people from our cultures would rather sweep these matters under the rug than actually admit that their child might have a “problem”.  Some parents may have no clue and end up pushing their child even harder rather than providing a good support system for him or her to cope with being different.

 

What is Autism?

Autism Spectrum Disorder (ASD), also known as Pervasive Developmental Disorders (PDDs), is a complex developmental disability causing severe and pervasive impairment in thinking, feeling, language, and the ability to relate to others, that typically appears within the first 3 years of life. It is usually first diagnosed in early childhood and ranges from a severe form (difficulties in language, social skills and behavior) to a milder form (high-functioning with abilities to speak but challenged in behavior).  These different ranges are what define the “spectrum” of Autism.

According to the DSM (Diagnostic Statistical Manual), “Autism is impairment in social interaction along with two of these symptoms: impairment in the use of non verbal behavior, failure to develop peer relationships, lack of seeking to share enjoyment or lack of social or emotional reciprocity.”  Autistic individuals display delays or abnormal functioning in at least one of the following areas with onset prior to age three years: social interaction, language or imaginative play. There is no clear indication of what causes autism and there is no cure for it.

Facts

Centers for Disease Control and Prevention (CDC) reports that approximately 1 out of 110 American children are diagnosed with Autism. Some people believe the numbers may be under-reported and others believe it is over- diagnosed.  “Studies have shown that about one third of parents of children with an ASD noticed a problem before their child’s first birthday, and 80% saw problems by 24 months.”  Boys are at much higher risk than girls (1:4), and children from families in which at least one other person who is autistic are at a higher risk of having autism.

Cause

A controversial issue, without a clear answer.  Usually it is a combination of genetic and environmental factors along with other factors.  However, there is not enough evidence to support that one factor is the sole cause for the disorder.  Some hypotheses are: vaccinations, living in coastal regions, some links to problems with immune system, some believe Gluten in foods may also be a cause.

Symptoms

Babies develop at their own pace, and many don’t follow exact time lines found in some parenting books. But children with autism usually show some signs of delayed development by 18 months. If you suspect that your child may have autism, discuss your concerns with your doctor. The earlier treatment begins, the more effective it will be. Your doctor may recommend further evaluation if your child has ALL or MOST of these symptoms:

  • Doesn’t babble or coo by 12 months
  • Doesn’t gesture — such as point or wave — by 12 months
  • Doesn’t say single words by 16 months
  • Doesn’t say two-word phrases by 24 months
  • Loses previously acquired language or social skills at any age
  • Repeated movements such as hand flapping

Treatment options

Medication is now available to help alleviate symptoms but we must remember the medication cannot cure Autism.  Some studies have shown that a Gluten-free diet can also help reduce symptoms.

Early intervention and therapy has also proven to be extremely helpful.  Applied Behavior Analysis (ABA) is a form of therapy which helps the child learn at their own pace and is usually performed by a behavior therapist (Smith, 1999). Some other forms of therapy are structured teaching, speech and language therapy, social skills therapy and occupational therapy.

If your child has repetitive behaviors that are reoccurring over long periods of time it may be a good idea to bring up your concern with your child’s pediatrician.  Usually if your pediatrician deems it necessary your child will be referred to a neurologist for further testing and a possible diagnosis.

“Autistic beings develop and bloom if their spirits, talents and self-esteem are not destroyed by bullies, prejudice, ‘doggie-training’, and being forced to be ‘normal’.” –Trisha Van Berkel

How does it effect our community?

If your child is diagnosed with autism the government provides free services to help reduce the behavioral symptoms.  This information is very important to remember since there are many  children who suffer from Autism but because they never received a diagnosis, the child was not able to benefit from these free services.

As parents, we may ignore or become defensive of people’s comments about our child’s different behavior.  We may also fear what it means to get a diagnosis and if that child will be “singled out” from others.  Know this: you are helping your child by giving them the treatment as soon as possible.  The sooner they receive help, the sooner they will be able to develop skills to meet the school’s standards.  Proper intervention will help Autistic children learn life skills which will help them function as independent people when they become adults.

What is ABA?

Behavioral therapists mainly use Applied Behavior Analysis (ABA) in which procedures derived from principles of behavior are systematically applied to improve socially significant behavior to a meaningful degree and to demonstrate experimentally that the procedures employed were responsible for the improvement in behavior (Baer, Wolfe & Risley, 1968).  ABA is a mixture of psychological and educational techniques that are utilized based upon the needs of each individual child.

There are six key aspects to ABA.  These aspects are: science, systematic and technical, procedures derived from the basic principles of behavior (operant behavior), socially significant behavior, improvement and understanding functional relations (the factors that are responsible for the improvement).

ABA consists of the following sub-theories:

  • Discrete Trial Training (DTT), where behavior therapists work one on one with a child in small steps to shape  behavior.
  • Picture Exchange Communication System  (PECS), where they use motivating pictures to  communicate words.
  • Pivotal Response Training (PRT), where they use play-based reinforcement of many kinds in an attempt to respond to commands.
  • Floor time, when the child directs the play and the therapist encourages the child to make connections.

Coping and support

Raising a child with autism can be physically exhausting and emotionally draining. These ideas suggested by Mayo Clinic may help:

  • Find a team of trusted professionals. You’ll need to make important decisions about your child’s education and treatment. Find a team of teachers and therapists who can help evaluate the options in your area and explain the federal regulations regarding children with disabilities.
  • Take time for yourself and other family members. Caring for a child with autism can be a round-the-clock job that puts stress on your marriage and your whole family. To avoid burnout, take time out to relax, exercise or enjoy your favorite activities.
  • Seek out other families of autistic children. Other families struggling with the challenges of autism can be a source of useful advice. Many communities have support groups for parents and siblings of children with autism.
  • Learn about the disorder. There are many myths and misconceptions about autism. Learning the truth can help you better understand your child and his or her attempts to communicate. With time, you’ll likely be rewarded by seeing your child grow and learn and even show affection — in his or her own way.

“Autism means your children approach our world differently. We just need to learn to interface through therapy, play, school, medical interventions, depending on the child’s needs. Give them the tools they need so they can communicate and understand; but I’m not one of those who insist on a cure. Our children have various gifts and instincts that might well be changed if they no longer had autism — I don’t want to lose those.” -Babs M. (a mother with autistic children).

Resources

Books:

1. Ten Things Every Child with Autism Wishes You Knew

2. Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger’s Syndrome, Pervasive Developmental Disorder, and Other ASDs

3.    Blessed with Autism by Christina Peck (A Parent’s Resource for Securing Financial Support for the Treatment of     Children With Autism and Special Needs)

4.      The Autism Book: Answers to Your Most Pressing Questions by S. Jhoanna Robledo, Dawn Ham-Kucharski

5.     Activity Schedules for Children with Autism: Teaching Independent Behavior by Lynn E. McClanahan, PhD & Patricia J. Krantz, PhD

Websites, workshops and online support groups:

1.     http://www.autismspeaks.org/

2.    http://www.autism.org.uk/

3.      Support Group: http://www.mdjunction.com/autism

4.      Regional Center of Orange County:  http://www.rcocdd.com

5.      Complete list of DAN (Defeat Autism Now) doctors in California:

http://www.healing-arts.org/children/amyholmes.htm#CA

6.      List of workshops in the United States: http://www.autismweb.com/events.htm

References

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About Nafisa Sekandari 33 Articles
Dr. Sekandari is a licensed clinical psychologist who specializes in working with families and children of all ages. She is currently licensed in California and Arizona. For more info. please visit www.drsekandari.com

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