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Parents who face a diagnosis of a child with autism may rapidly turn to the internet for information on autism spectrum disorder or ASD.

Autism. For some, it’s a word rarely heard, rarely used.  For others, Autism is a reality that enters their life like a fog bank creeping up from the horizon. Or, in some cases, it can be like a firework exploding inside their home. When a person, usually a young child, is diagnosed with autism (or ASD, autism spectrum disorder), life can turn upside-down in a heartbeat. Questions swirl, doubts descend, and feelings pile up quickly.  Parents who face a diagnosis of a child with autism may rapidly turn to the internet for instant information on what this may mean for their child, for their family, for their future.

There is a sudden drive to find answers, make decisions, and get help. And for many parents unexpectedly landing in this position, those initial information searches can amplify their fears. Phrases like “mental disorder,” “repetitive behaviors,” and “limited or no communication skills” fill up the screen and may feel like shocks to the system. But wait:  there is help, and clarity and direction can be found.

First, take a breath.  A very long, deep breath. Or maybe 10 of those. Entering this arena of autism spectrum disorder or ASD is overwhelming, and it is not going to be easy.  There are choices to be made, over time, and paths to follow. It may seem daunting at first because there are (fortunately in this day and age) many directions and information in which parents can go.

There is ABA therapy (Applied Behavioral Analysis), the Son-Rise Program, the Greenspan Floortime Approach, DIR, and RDI, to name a few. A quick search for autism therapy can bring over 41 million results! Do you have to decide today?? Certainly not. And if an intervention is tried but proves unsuccessful, as some will, change direction!  

Perhaps rather suddenly after the diagnosis of a child with autism, regular education seems to be replaced by special education, and terms like “IEP” and “F.A.P.E.” are acronyms to become familiar with. One might hear about Jenny McCarthy’s journey or Doug Flutie’s foundation. Holly Robinson Peete’s reality show might become a favorite. Well-meaning friends might refer the parents to Emily Perl Kingsley’s 1987 essay, “Welcome to Holland.” Things you never thought about pop up like puddles on a sidewalk. Even though the weather outside seems calm and temperate, indoors there seems to be a storm of enormous proportions brewing. Can you prepare for the storm, or even keep it from ransacking your life? You certainly can. It happens day by day.

Interventions

And then, parents begin to wonder about medical interventions for some of the physical symptoms (GI problems? Seizures? Food allergies?) that child with autism or ASD seems to bring along. There will be eventual decisions about medical care, perhaps biomedical therapies, special diets, and potentially, searches for speech therapy, occupational therapy, sensory integration activities, chiropractic care, or homeopathy.  

Overwhelming? Yes!  Manageable? Yes! There can be comfort in adopting the attitude that this is not a sprint; it is a marathon. No one is firing the starter pistol and expecting you to dash for the finish line in record time! Take your time, delve carefully and methodically, and keep your wits about you. Allow yourself to sort through information about ASD and be selective about what you read and decide to try.

Unfortunately, with the tons of resources available, there obviously can be misinformation and misguided advice out there. Deciding what is best for your child, and your family is your right and your mission. And it takes time.  

Diagnosis

What can increase stress for parents is that when reality changes due to a serious diagnosis of a child with autism, or Pervasive Developmental Disorder (PDD), or possibly Asperger Syndrome (AS), the child is needing care that may not be in place yet. Chances are that an array of symptoms led the parents to seek a professional opinion in the first place. They’ve possibly been living with some upheaval and worry prior to the diagnosis, and they might not be sure what to do (before and after that official diagnosis comes along). It IS stressful!  

We all want to care for and provide for our precious children in the best ways possible. And seeing them struggle, or having meltdowns, or waking up through the night, is undoubtedly difficult! One essential thought to keep in mind:  take care of yourself. Remember the “oxygen mask technique” – you know, you’re on an airplane and the flight attendants remind you to put on your mask first and then help others to put on theirs. (Granted, some of us special needs parents are going to need help putting on our own masks from time to time!). The bottom line is that taking care of both yourself and your child is a high-priority balancing act.  

Book Suggestions

Some immediate assistance may come in the form of books. Two highly recommended titles are Apps for Autism by Lois Jean Brady, M.A., CCC-SLP, and The Reason I Jump by Naoki Higashida. The former is a thorough, comprehensive, and easy to scan the book with a plethora of relevant apps. The latter is a first-person narrative written by a young adult who insightfully offers the reader interesting elucidations on what it’s like to have autism or ASD.  

So breathe, pace yourself, investigate, read, take your time, and employ self-care. When faced with a life-changing diagnosis that pushes a family into the world of special needs, build a support system. It can be from the roots of a support network that you and your child grow and thrive. Just as an acorn can take hold and become a mighty oak tree, so too can the special needs parent, whose strength and determination, though tested, can be a beautiful sight to behold.  

“Autism is not a word to be feared; it is a person to be loved.”  (www.differentnotless.us)

By: Keri-Lin Horon

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