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Autism 101 – What is Autism Spectrum Disorder and how is it diagnosed?

Prefer video?  Check out our Autism 101 video series at the end of the post!

Are you worried about challenges or delays you may be seeing with your child? Or maybe a provider has started to talk with you about Autism, or considering a referral to another provider.

This can be a scary, confusing and overwhelming time for parents.  So let’s talk discuss through the basics of what is important for a parent to understand about Autism, what to look for or consider and how it is diagnosed.

Autism Spectrum Disorder (ASD) presents uniquely to every child with the disorder.  As parents of children with Autism, we know this better than anyone! Each child can have a huge variety of strengths and challenges, there is no one single way that every child with ASD presents with.  In general ASD encompasses a “spectrum” of characteristics that most commonly MAY include various degrees of challenges with: 
  • social skills
  • repetitive behaviors
  • speech and nonverbal communication.  
Remember though, Autism Spectrum Disorder is truly a spectrum.  As we discuss different signs, or common challenges that are seen with ASD, know that some children maybe experience 1 or 2 of these things, or some may experience many of the items mentioned, and to all varying degrees.

Depending on the severity of the ASD, some children also have difficulties (to different degrees) with:

  • sensory processing
  • sensory sensitivities
  • GI issues
  • sleep disturbances
  • anxiety
  • attention deficits
Sensory

According to the Centers for Disease Control, autism affects an estimated 1 in 54 children in the United States today.  In 2013, the American Psychiatric Association merged four distinct autism diagnoses into one umbrella diagnosis of autism spectrum disorder (ASD). They included autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.  

There is no known cause of ASD.  Most research shows that it is caused by various genetic and environmental factors.

What are the early signs of Autism?

What should a parent look for or consider? What questions should you ask your physician?

A diagnosis of Autism must come from a medical professional.  That could be a Neurologist, Psychologist, Psychiatrist or Neuropsychologist.   Some children show no signs at all of ASD until they are 2 or 3 years old, or even later; while some children show signs as a baby.  

While none of the signs below alone would by any means confirm a diagnosis of ASD, below are some signs from Autism Speaks, that if you see, you should discuss with your child’s pediatrician and possibly consider an appointment with a pediatric neurologist or other specialist. (https://www.autismspeaks.org/signs-autism).

 

Red flags to consider, as listed by AutismSpeaks.com:

While children typically are not diagnosed with ASD before 2 years old, there are many of these early signs, that regardless of a future diagnosis, would indicate the need for early intervention services!  And we know, with early intervention – the earlier the better! Research undoubtedly shows significantly improved outcomes for our children when early intervention is involved! This includes improved speech, improved learning, improved social skills, improved attention, and decreased behaviors, just to name a few!  (And this is regardless of any diagnosis!)

Check out our article "Early Intervention & IEPs: What parents should know about the IDEA"

 

Research undoubtedly shows significantly improved outcomes for our children when early intervention is involved! This includes improved speech, improved learning, improved social skills, improved attention, and decreased behaviors, just to name a few!  (And this is regardless of any diagnosis!)


Developmental Milestones

What are developmental milestones?  Why should I track them?

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Parenting is a whirlwind of learning and trial and error for all of us every day!

The CDC provides a wonderful resource for parents on what typical developmental milestones are and great tips for how you as a parent can promote growth and development at each mile marker! 

They also have a free milestone tracking app. The app includes milestones for playing, learning and speaking to moving from birth to age 5. It even includes photos and videos!  It is another great free resource.  

Easter Seals also provides a free, confidential online screening tool that can be used to keep track and monitor your child’s growth and development over their first 5 years of age.  You can take the screening throughout the first 5 years and it will alert you if there are any possible concerns with your child’s progress that you may want to discuss with your child’s healthcare provider. 

We will link to all 3 of these free resources in the Links and Resources section at the end of this post.

I would caution parents however – remember milestones are just information on the average age that children “typically” perform certain activities.  Averages are only Averages! 

By NO means at all, if your child reaches any of these milestones early or late, does it at all mean that they will have any sort of deficit, future challenge or any type of  diagnosis whatsoever! So many children reach milestones at all different ages, and it means nothing at all. Every child grows in their own way and that is what makes every child unique and incredible! Milestones should only be used for guidance. 

If you notice your child is not meeting a trend of milestones or multiple milestones, especially in a certain area then it provides an opportunity to ask questions to your child’s pediatrician.  You can discuss your child’s progress with their physician and whether or not it is something to be concerned about and/or something that you may want to ask for support with, such as from an occupational, physical or speech therapist or a referral to another provider, which may include a Developmental Pediatrician, a Pediatric Neurologist, or a Pediatric Psychologist or  Psychiatrist . Don’t be afraid to ask for a referral and discuss what type of referral may be most appropriate.

It is also important to remember that as parents, we know our children better than anyone!  We understand our children best and should trust our parental intuition and gut feelings.  If you have concerns and you’re not satisfied with your pediatrician’s response, it is also absolutely within your right to reach out to other providers, including directly to therapists to ask them questions.  

Most pediatric therapists will provide screenings, often for free, to let you know from their perspective if your child has any delays that they feel they may be able to help with or offer you more specific advice on strategies that you could implement at home to help your child continue to grow and develop!

 

What is an Autism Screener?

The American Academy of Pediatrics (AAP) recommends that all children receive autism screening at 18 and 24 months of age.  One of the recommended screeners by the AAP, and commonly used is the Modified Checklist for Autism in Toddlers. (See links to the screener below).  This screening is recommended to be used between 16 and 30 months of age.  

As a parent you can request a developmental screening and/or fill out an autism screener and bring it with you to your visit with your provider. 

This is just a screening – it does not diagnose Autism. However, depending on the results of the screening, it may indicate that a full evaluation is recommended. You can take this screener and bring the results with you to your health care provider, along with any other milestone checklists, and concerns you may have.

Remember – you know your child best.  If you still have concerns after meeting with your healthcare provider, you can also reach out yourself, as a parent to your local Child Find program to discuss your concerns and request a screening.

GET YOUR FREE AUTISM CHECKLIST

Get this FREE breakdown of the common signs and challenges with Autism, an understanding of the different types of providers & what your best next step is!


How is Autism Diagnosed?

While signs should be monitored and discussed earlier, ASD can be officially diagnosed as early as 18 months, however most commonly at 2 years old.

According to the National Institute of Mental Health, diagnosis typically is a 2 step process and includes evaluating a child’s development and behaviors. 

  • A developmental pediatrician—a doctor who has special training in child development
 
  • A child psychologist and/or child psychiatrist—a doctor who has specialized training in brain development and behavior.
 
  • A neuropsychologist—a doctor who focuses on evaluating, diagnosing, and treating neurological, medical, and neurodevelopmental disorders
 
  • A speech-language pathologist—a health professional who has special training in communication difficulties.  The Speech therapist may use an actual diagnostic tool to determine the child’s skill levels or difficulties compared to averages for their age.   The tools typically rely on both parents’ or caregivers’ interviews and/or questionnaires and a professional’s observation of the child’s behavior. Again, the tool by itself does not provide the diagnosis, but should be used in conjunction with the screening, parent interviews and other provider observations.  

Resource: https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd

 This second piece of the diagnosis should include the use of a diagnostic tool.  Provided by the CDC, below is a list of the most common diagnostic tools.

  • Autism Diagnosis Interview- Revised (ADI-R) external icon
    • A clinical diagnostic instrument for assessing autism in children and adults. The instrument focuses on behavior in three main areas: reciprocal social interaction; communication and language; and restricted and repetitive, stereotyped interests and behaviors. The ADI-R is appropriate for children and adults with mental ages about 18 months and above.Autism Diagnostic Observation Schedule – Genericexternal icon (ADOS-G)

  • Autism Diagnostic Observation Schedule – Genericexternal icon (ADOS-G)

    • A semi-structured, standardized assessment of social interaction, communication, play, and imaginative use of materials for individuals suspected of having ASD. The observational schedule consists of four 30-minute modules, each designed to be administered to different individuals according to their level of expressive language.

  • Childhood Autism Rating Scale (CARS)

    • Brief assessment suitable for use with any child over 2 years of age. CARS includes items drawn from five prominent systems for diagnosing autism; each item covers a particular characteristic, ability, or behavior.

 

  • Gilliam Autism Rating Scale – Second Edition (GARS-2)

    • Assists teachers, parents, and clinicians in identifying and diagnosing autism in individuals ages 3 through 22. It also helps estimate the severity of the child’s disorder.

 In addition to the tools above, the American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition  (DSM-5) provides standardized criteria to help diagnose ASD. (See link to the actual DSM-5 diagnostic criteria below). 

Our focus here was the basic understanding of what Autism is and the process for getting a screening or diagnosis.  If you have noticed delays in your child meeting milestones, or have concerns regarding something you are seeing with your child – the most important next step is to talk with your child’s pediatrician and discuss the options for referrals or next steps.  

Regardless of whether your child receives any type of diagnosis or not – the vital step is starting early intervention as soon as possible!  The earlier the better!  So talk to your child’s pediatrician, and depending what you are seeing – consider talking to an occupational therapist, a speech therapist, a behavioral therapist or a psychologist. There are many resources out there if you know where to look.  So taking those steps as early as possible is the most important thing you can do for your child!

Let Us Help!

We are here to support you!  If you don’t know what your next step is, you don’t know what resources are available to you, or you just need to talk through the challenges you are having with your child and get some guidance or understanding - I am here for you! 


Contact us anytime, and check out our parent support options, I would love to connect with you and help you on your journey!


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About Us

​In 2013 our twin boys Jacob and Noah were diagnosed with Autism Spectrum Disorder. We began a journey of discovery in…

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