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Resources for New Parents of Children with Autism

Introduction

Having your child diagnosed with Autism Spectrum Disorder, undoubtedly, is going to be a very challenging and daunting experience and will require some lifestyle changes.  For many families autism is a journey side by side with many other families and dedicated professionals all working diligently in every aspect of the autism arena to help improve the quality of life of every child and family.  As tough as it gets, know that you are never alone.

The Autism Exchange (AEX) website is a place where all parents can find a plethora of information pertaining to your journey with your child.  If you can't find what you are looking for, then you can request to have the information put on the website through the Contact Us feature.  We are parents helping parents and we want every new parent to be able to navigate this site and begin their journey with lots of help and support.

Still Learning About the Diagnosis?  Here Are Some Helpful Hints:

  • The American Psychiatric Association published the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in 2013 and decided to clump all of the autism spectrum diagnosis, including Asperger's Syndrome, under the diagnosis of Autism Spectrum Disorder (ASD).  Even though autism continues to be classified under Mental Health Disorders, the United States Supreme Court ruled in the 1991, that in the case of "\Kunin vs. Benefit Trust" the Court of Appeals sustained the trial court's finding that autism is not a "mental illness" and that it is instead organically based.  ASD is now recognized as a biological disorder and was given the International Classification of Diseases code (ICD-9) 299.0 which can be used for insurance purposes.
  • Autism is a spectrum disorder under one umbrella.  All ASD children will have different etiologies and contributing factors combined with different symptoms; therefore, what works for one child may not necessarily work for another.  Don't get discouraged.  This just means that diagnostic testing for underlying issues is very important.  Basically, the more information you have on your child, the more you'll be able to understand what is wrong - what is missing – what is needed to address the issues and where to go next.
  • Autism is treatable. Keep in mind that healing is never in a straight line.  As you begin the journey, the process might be painstakingly slow - 5 steps forward and 3 steps backwards.  Peeling the onion and getting through the layers is the way to rebuild the broken down foundation.  Eventually the process will begin to just move forward and over an arc of time progress and change will be visible.  Living with autism requires patience, but even the smallest nuance of change can be ever so rewarding.
  • Never assume your child is acting out just because they have autism or just to test your patience.  Behavioral problems are signs of deeper underlying issues that remain unaddressed and may be biomedical in nature.  Therefore, leave no stone unturned until the source of the problem is found.  Treating symptoms can be helpful in the moment, especially in attenuating behaviors, but ultimately treating underlying causes can make a huge difference in your child's healing process and may resolve many of the unwanted behaviors.
  • It is extremely helpful to keep a journal, video tape your child or log daily information on a spread sheet pertaining to your child's diet, supplements, behaviors, therapies and so on.  It is easy to forget where you started with your child and where you keep arriving.  Going back over recorded information can sometimes give clues to behavioral problems, food intolerances, sleeping issues, sensory disturbances, or whatever reoccurring issues are happening with your child.  If there is a culprit, it may be as simple as an environmental, dietary, or nutritional source.
  • Remember that you know your child better than anyone else, trust your intuition and better judgment and do not be afraid to give your opinion and be proactive in your child's healing process.  You are your child's voice!
  • Early intervention is your best ally.  The sooner your child gets the help and support they need, the greater the possibility of losing their diagnosis and possibly achieving full recovery.
  • Don't miss picking up the latest comprehensive resource book for autism parents called "Outsmarting Autism" by Patricia Lemer.  It is a valuable resource especially for new parents and just out on the market in 2015.

Need To Know How To Begin Your Journey?  Here Are Some Tips:

Working on all fronts is paramount to your child's progress.  Your child's program may include dietary changes, daily living modifications, educational programs, biomedical treatments, alternative therapies, and more.  The AEX is laid out in an organized manner to make it easy for users to find autism information quickly.  The AEX primary categories are color coded (as shown below) and are located in the top navigation bar of this web site.  The primary categories include:

Diet

Changing your child's diet is every parent's worst nightmare.  If your child is craving a particular food constantly, then more than likely your child is allergic or sensitive to that food and that food is more than likely impacting behaviors.  Meltdowns, hissy fits, and aggressive behaviors over food may be an indication of a food addiction.  Many children with autism are addicted to sugar and carbohydrates, some can't tolerate gluten; others can't tolerate casein (dairy); some can't tolerate both; others can't tolerate grains, chemically processed foods, food additives, genetically modified foods, preservatives and so on.  There are many diets and dietary lifestyle changes available to choose from which may be appropriate for your child (see the Diet tab).  (Please note that an uncooperative, noncompliant child may be much more responsive to dietary changes after addressing high yeast/Candida levels due to yeast overgrowth in the GI tract. Talk to your doctor about this as they may want you to consider special testing.) Reference our Autism Exchange Diet Resources section for more information.

Daily Living

The Daily Living category encompasses a variety of topics focused on helping you and your child navigate areas that are of concern like safety or stressors or areas that need your attention like school planning or financial considerations.  There is a lot of very helpful information in this section and we encourage all new parents to read the Daily Living areas (see the Daily Living tab).  In addition, as your child grows into an adult, there will be new areas to consider such as jobs and housing.  We expect new areas to be added to the Daily Living category on a frequent basis because of the broad nature of this category as well as the fact that it includes information from young children to young adults to adulthood.

Education

In 1975, Congress enacted the Individuals with Disabilities Education Act (IDEA) to ensure that children with disabilities have the opportunity to receive a Free and Appropriate Public Education (FAPE) just like other children.  Children with autism may not be able to access the regular school curriculum.  However, an Individualized Education Program (IEP) is created by the school's IEP team in order for the child to be successful in his or her own curriculum.  The IEP team will discuss your child's strengths and weaknesses in order to determine what goals are appropriate for your child.  The goals on the IEP will drive your child's placement.  In addition to the IEP, there are many educational methods to support children with autism.  Some parents have had good success utilizing the additional methods (see the Education tab).  New educational methods are emerging each year and it is important to review each of the methods listed to see which methods may be appropriate for your child.

Biomedical

The AEX has organized the Biomedical section to include: Conditions, Possible Causes, Therapies, and Testing Labs.  Since this section covers a multitude of medical topics, seeking out the right physician is extremely important and one of the first places to start.  The Medical Academy of Pediatric Special Needs (MAPS) Doctor is a group of highly specialized autism physicians well trained in the latest research and technology; an excellent place to start.  Children with autism are sick and need medical attention.  Medical issues may include severe gastrointestinal symptoms; heavy metal toxicity (toxic overload), Lyme, seizures, hyperactivity, low muscle tone (hypotonia), obsessive compulsive disorder, mitochondrial disorder, abnormal thyroid, immune irregularities, allergies, viral or bacterial infections, genetic mutations, and the list can go on and on.  Medical issues can trigger serious behavioral problems.  Many of our children are unable to communicate their pain or discomfort verbally, but will exhibit their distress through behaviors and often times aggression.  Don't assume this is just a behavioral problem – look for underlying medical issues (see the Biomedical tab).  Some parents may prefer neurologists, developmental pediatricians, gastroenterologists and many alternative physicians.  Choose someone you feel comfortable with and who understands the needs of your child.  Getting the right physician is paramount to a successful journey with your child.  The AEX links to practitioner lists on other sites.  You can access these links by clicking on the AEX Directory button on the Home page and selecting Practitioners List as the sub-category (third drop down menu).

Therapies

As you embark on your journey to heal your child, you will run across numerous therapies available for children on the autism spectrum.  Some of these therapies include: speech therapy, occupational therapy, craniosacral therapy, vision therapy, Auditory Integration Therapy (AIT), and neurobiofeedback.  These are a few of the most common therapies for ASD children.  Some therapies are more adaptive to younger children while other therapies are more appropriate for the older child.  Nowadays, many therapies have a variety of choices which may make a difference for your child, so research the therapies to see what works best and talk to your doctor (see the Therapies tab).  No matter what therapy you are doing with your child, always remember that your child needs some modality in order to express his or her needs.  A form of communication will not only train your child to express his or her wants and needs, but also may help alleviate any possible frustration build up that could result in unwanted behaviors.  Years ago, parents utilized assistive technology devices or the picture exchange communication system (PECS) to encourage their child to make choices and communicate their needs.  Today, the Ipad has revolutionized the assistive communication world with language programs such as Proloquo2go, Verbally, Alexicom, and a multitude of language apps.  Some children are capable of typing on computers or tablets while others might prefer sign language.  No matter what the modality of communication is, communicating is fundamental and key to opening up your child's world.

More Ways to Connect

Parents supporting one another is a very integral part of The AEX web site.  You will see that in addition to the primary categories above, our site also has many helpful and interactive functions for users including:  a forum to communicate with other parents; a Practitioner, Business, and Partnership Directory to locate support; an Exchange Box to upload any new information that you care to share with other users; and a News & Events section to keep up with the latest in autism news, conferences, webinars, etc.  In addition to these areas, The AEX offers a free newsletter as well as an optional subscription service including a Consumer Corner with hundreds of autism related products and services, supplier coupons, an interactive library with hundreds of articles, and a What's Trending area to see what is most important to other users.  Sign up for a free subscription trial to check out the benefits.