What is Autism Spectrum Disorder - Emily's Puzzle

What is Autism Spectrum Disorder?

When my son was first diagnosed with autism I researched and read everything I could find on the subject.  The amount of information available on the internet about autism is staggering and not all of it is accurate.  I thought I would write a post outlining the information that I found most helpful during that time.

What is Autism Spectrum Disorder - Emily's Puzzle - CourageThis post is for all of my fellow parents that are waiting or wondering if their child is on the spectrum or those whose child has just been diagnosed and are wondering, “Now what?”  Take a deep breath, me and thousands of others have been where you are. Each person’s journey and child are unique but the fears, worries and feelings are often the same.  Autism is not a race, it’s a lifelong journey. One with many ups and downs.  It’s okay to hate it at times, it’s okay to feel sorry for yourself or your child at times, it’s okay to take a break whenever you or your child are feeling overwhelmed.  Autism cannot be figured out in a day, week or even a year. Please remember to breathe, take breaks and carve out some time for yourself when possible. Reach out to other families in similar situations whether personally or online. Parenting a child with autism isn’t easy and all of your faculties will be tested at some point but you WILL be stronger, wiser, more patient and a better parent because of it.  My journey started out of fear which turned to hope and later evolved into faith.  I hope to help make your journey a little less scary as you learn to navigate the waters of autism.

This article is a compilation of information on autism that I’ve read and researched over the years in my own words.  At the bottom of this post is a list of my favorite websites, Facebook pages and articles.  I’ve also included a link to an article defining the most common acronyms used.  The autism community LOVES acronyms and it can be confusing at first.  Trust me, in a few months you’ll know and be using most of them yourself.  Please take what you find helpful and leave the rest.

Autism Spectrum Disorder (ASD) is a range of complex developmental disorders that significantly affects three areas, verbal and nonverbal communication, social interaction, and restricted and repetitive interests or behaviors.  The signs and symptoms or red flags of autism are often times subtle, especially in babies and toddlers.  In higher functioning children the symptoms are often misdiagnosed as ADHD which can delay a proper diagnosis and treatment at an earlier age.  The earlier a diagnosis is received and treatment begins the better the long-term outcome is for an individual.  However, it’s never too late to seek treatment and counseling. Learning appropriate coping mechanisms at any age is extremely important in providing those living with autism a higher quality of life. Those diagnosed after the age of 6 often times show slower improvements with therapy because they’ve already begun to adapt to their environment, finding coping mechanisms that are not always appropriate.  Breaking those habits can prove to be extremely difficult but not impossible.

Autism currently affects 1 in 68 children in the US (an estimated 1 out of 42 boys and 1 in 189 girls).  There is no cure for autism. However, there are a variety of therapies and treatments used to help diminish some of the behaviors, as well as coping mechanisms to help those individuals diagnosed  with autism live productive and more independent lives.  Click here for more information on therapies and treatments for autism.

What is Autism Spectrum Disorder - Emily's Puzzle - DSM-5 BookIt is called a spectrum due to the varying degrees of the diagnosis.  Since the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) came out in 2014 they no longer differentiate the five varying degrees of autism.  They are now lumped together under one term, Autism Spectrum Disorder.  The spectrum varies from high to low functioning.  High functioning (previously known as Asperger’s), usually means the child has language (sometimes above-average language skills) but is moderately delayed in communication and social skills and has behaviors and repetitive interests that affects their day to day activities.  Low functioning is when the person shows an extreme delay in language, often is unable to speak or speaks very little, shows extreme delays in communication and social skills and has repetitive behaviors or interests that significantly affects their daily activities.

Currently, the gold standard tool for an autism diagnosis is the Autism Diagnostic Observation Schedule (ADOS).  The ADOS assessment is a series of systematic play tasks as well as a lengthy parent questionnaire that is performed on children two years of age or older.

What is Autism Spectrum Disorder - Emily's Puzzle - ADOS, Red Flags and Resources

My youngest son, Eli undergoing the “play part” of the ADOS assessment when he was three years old.

There is no medical or scientific approach for diagnosing autism.  It varies with each pediatrician.  Some diagnose liberally, feeling that it is better to diagnose a child so that they may begin receiving therapies as early as possible.  Others hesitate to diagnose a child until they are more certain of the diagnosis.

As a mother of an autistic child, I am forever grateful to the doctor that diagnosed our son when he was only 25 months old.  The doctor spent 20 minutes with him performing a variety of play tasks and determined, in that short amount of time, that my child was on the spectrum.  I spent many weeks following my son’s diagnosis questioning the validity of it.  However, in the meantime my son was receiving 7 hours of services from therapists each week and growing by leaps and bounds.  A couple of years later when it became more apparent to me that my son was, in fact, on the spectrum, I’m grateful to the doctor for diagnosing him so young.  We were able to start services immediately and not waste precious time waiting and seeing.  If, for some reason he had been wrongly diagnosed or his symptoms no longer were apparent enough to require services then we would have dropped the diagnosis “label” and not sought any more therapies or services.  If, at some later point in his life, he required additional services we would have had the diagnosis to receive them.  Having an early diagnosis was a win/win for us.

Most physicians won’t diagnose a child before the age of two but symptoms can first begin to appear at six months.  Tracking your child’s developmental milestones from birth is extremely important in identifying red flags.  If your child is not meeting two or more milestones (or shows any red flags for autism) please talk with your pediatrician.  Request an autism evaluation or contact your local Early Intervention Office to request a free evaluation.  All children reach milestones at various times but if your child is not meeting two or more age appropriate milestones then it’s definitely worth a follow-up.

BabyCenter.com has a detailed list of developmental milestones from birth to 3 years of age and the most common red flags for each age group.  I’ve included a list below of some of the more subtle red flags for autism in babies to toddlers (6 months – 2 years) that I discovered in my lengthy research to determine if my youngest son was showing signs of autism.  This list is not a complete list of red flags nor should it be used as a diagnostic tool but merely a checklist to give you more insight into the red flags for autism.  I strongly suggest seeking an evaluation if you have any concerns rather than adopt the “wait and see” approach.

Red Flags for Autism in Infants to Toddlers (6 months – 2 years)

    • Slight head lag when pulling your child to a seated position. One of the earliest red flags for autism is when your child seems to have a hard time holding their head up when being pulled to a seated position.  A typical 6 month old baby will automatically lift their head, tucking their chin into the chest when being pulled by their hands to a seated position.
    • Rigidity.   Your baby doesn’t conform to your body when being held, seeming tense or rigid.
    • Good, quiet baby.  Your baby is very quiet, not demanding, doesn’t look at your face or in your eyes while being breast or bottle fed.  She doesn’t reach for you or indicate she wants to be held when you are near.  She doesn’t follow the sound of your voice when you are away from her.  Often times people will remark that your child is a good baby because they don’t fuss or require a lot of attention.
    • Delay in nonverbal communication.   Your baby doesn’t raise his arms to be picked up.  He doesn’t shake his head to indicate yes or no.  He doesn’t point to get something he wants or when you point to show him something he continues to stare at you instead of looking to see where you are pointing.  He does not wave bye-bye, clap or play peek-a-boo without intensive and continuous instruction.  Most typical children automatically begin to wave, clap or play simple games like pat-a-cake and peek-a-boo by 12 months after watching a parent or sibling do it a few times.
    • Does not seek parent out for comfort.  Typically developing children, when scared or alarmed will instinctively look for their parent and run to them for comfort.  Or if in a parent’s arms will instinctively lean in closer or look at their parent to seek reassurance.  A red flag would be if your child seems to lack fear of anything or reacts to a loud noise or a scary situation by running away, just standing still and “shutting down,” staring off into space or a number of different reactions but doesn’t look to you or run to you for comfort.
    • Does not get into anything.  As frustrating as it is to have to baby proof your entire house from your increasingly energetic and curious toddler, that is a very typical and necessary milestone for growing and discovering their environment.  A child that shows no interest in his environment, how things work, or curiosity about what’s inside drawers, under couches, in the refrigerator, etc. may be showing signs of atypical development.
    • Points with entire hand or uses parent’s hand to point or reach for things.  Your child points to items in a book with their entire hand or thumb instead of their pointer finger or uses your hand as a tool to turn the pages in a book, to point to items or to get something they want.  This may be a red flag of improper social communication.  Typical children by one year of age begin using their pointer finger to point to things in a book or to communicate basic needs.
    • Does not participate in back and forth play.   A common red flag for ASD is if your child doesn’t hold a toy or item up for you to look at.  However, a more subtle sign is if they do hold up a toy for you to look at but remain focused intently on the toy, not looking to the parent to see their reaction of the toy.  This is a good example of an unspoken social interaction that most typical children learn without being taught.  They want to show their parent a toy and they look from the toy to the parent to see their parents reaction.  A child that struggles picking up on social cues doesn’t look to see the parents reaction but only focuses on the toy that he is holding.
    • Eye contact outside the home is inconsistent or nonexistent.  Almost every article on autism points out the lack of eye contact as a red flag which can be very deceiving to those with small children who seemingly make good eye contact with their parents at home.  Once again the signs are subtle.  Pay attention when your child is looking at you and see if they are actually looking at your mouth, nose or chin and only fleetingly in your eyes.  In public if your child suddenly becomes extremely shy or subdued, refuses to look up or acknowledge others and keeps her head down or purposefully avoids others and acts subdued.   This may look like the child is shy but usually shy children are still curious of strangers and will peer up at them from behind your legs or in the safety of your arms when the person isn’t looking.  It may indicate a delay in social interaction if your child keeps their head down at all times and refuses to acknowledge that person’s presence and becomes increasingly upset if prompted.
    • Any delay in language.  Delays in babbling, nonverbal and verbal communication.  If your child is not meeting his communication milestones at any time it’s worth an evaluation.  Most of the time it’s perfectly normal and your child will catch up but it’s always better to be proactive.
    • Excessive, repetitive, behaviors.   Any excessive, repetitive behaviors that interfere with daily activities.  Some examples include hand flapping which often times looks like your child is very excited bouncing up and down and flapping their hands.  Head banging out of frustration, when your child is sick or over excited or for no apparent reason.  Rigid facial expressions or posture.  Not playing with toys appropriately, instead spinning car wheels for long periods of times.  Flipping lids, coins or other flat toys to watch them wobble and spin.  Opening and closing doors repetitively without paying attention to the contents inside.  Pulling a string or picking lint off the furniture or carpet for long periods of time. Pressing the same button on a toy over and over again.
    • Any loss of skills previously acquired is a red flag and should be addressed immediately.

What is Autism Spectrum Disorder - Emily's Puzzle - Definitions, Red Flags and ResourcesThe best thing that you can do for your child is to listen to your instincts.  You can read, research and find red flags that point to almost anything your child is not doing.  At the end of the day, the red flag lists are just lists of behaviors or markers that may indicate a need for an autism evaluation.   If you feel that something is not right then seek an evaluation anyway.  It doesn’t necessarily mean that your child has autism but there may be a delay that could be easily treated with a few weeks or months of therapy.  It’s much easier to be proactive than to wait and see and later try to redirect patterns of behavior that have solidified over the years.

If you have any questions please feel free to comment below or send me an email.  Dealing with a new diagnosis or being stuck in the wait and see phase is a hard place to be.  I’ve been there and would love to hear from you.  It’s amazing how good it feels to connect with another parent who says, “I know what you are going through. I’ve been there too.”  Good luck to you and your family on your journey!

Still want to know more?  The following is a list of my favorite websites, Facebook pages and articles on autism.

First and foremost, if you’re wondering what all the acronyms stand for, you are not alone.  Click here for the Most Common Autism Related Acronyms.

Helpful Websites about Autism:

www.autismspeaks.org: This is a must-have site to bookmark for all things related to autism.  It has a variety of free downloadable toolkits (such as the 100 Day Kit which is a must-read for anyone whose child has just received a diagnosis) as well as an extremely helpful video series showing typical and atypical behaviors in children of all ages.  Take the Modified Checklist for Autism in Toddlers (M-CHAT) to see if your toddler is at low or high risk for autism.

www.autism-society.org: Their mission is to improve the lives of all affected by autism.  This is a very informative website with useful information regarding autism.

www.helpguide.org:  This site has a very helpful page dedicated to autism as well as an excellent list of resources and references.

www.myautismteam.com: A social network for parents and family members of a child with autism.  This is a wonderful tool to locate other families with a child on the spectrum in your area.  Also a wonderful resource to connect and network with other parents and family members who are on the same journey as you.

Parent-to-Parent USA: The intentional connection between a trained volunteer support parent and a parent seeking information, resources, guidance, and support from an experienced parent.  This is a wonderful website and service provided free of charge to all families with a child with special needs.

Recommended Facebook Pages on Autism:

Autism Discussion Page: It was developed by Bill Nason, MS, LLP to discuss tools that help children on the spectrum feel safe, accepted and competent.  This is a very thoughtful, smart and resourceful page with a large amount of helpful information and tools for those on the spectrum as well as those of us living with a child on the spectrum.

Mama Be Good:  My son’s occupational therapist recommended this page to me shortly after my son was diagnosed.  I didn’t know how to feel about her page initially because her perspective was so different than my initial perspective of “fixing” or “treating” my son’s autism.  Over time, her page was one of the few that changed my entire perspective on raising my autistic son.  She planted the seed that told me to trust my instincts.  Her insight into joining her son where he is now and giving him space to grow at his own pace, inspired me to look into homeschooling my own children.  I strongly recommend this page for a refreshingly honest and new perspective towards those we love on the spectrum.

Autism with a Side of Fries:  This is a wonderful page of a fellow autism mommy blogger that is full of useful, relatable information all written with a witty sense of humor.

Helpful articles on autism:

Advice for parents of children just diagnosed with autism from those who’ve been there.

States of Grief for Parents of Children with Special Needs

Autism for Parents: List of blogs written by parents of children with autism.

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