“Can I ask you a question? Don’t get mad at me or anything ok?”, my friend Heather tentatively said to me one sunny afternoon on my back porch. “Have you ever thought that Owen may be on the autism spectrum?”
The question hit me with such force, it almost took my breath away. I had never considered it. Why had I never considered it?
I knew about autism. My oldest son had tests showing he was on the spectrum 10 years before. I couldn’t answer her because Owen began melting down, for the third time that morning, and I had to tend to him.
Autism looks different for every person. Even someone well-versed on the subject may not recognize it right away. Sometimes we know deep down, but we don’t want to know officially.
Going through an autism evaluation with your child and obtaining an official diagnosis can seem daunting and terrifying. Here is the thing, without an official diagnosis, your child may not be able to get the services and support they may need throughout their lifetime.
In this article, I will give an overview of the autism evaluation process, and share some other information. I hope you will find it encouraging and useful.
Autism evaluation: Where to start?
Wellness check-ups generally go quickly. There are many factors that pediatricians look for when assessing a child’s general development. Any developmental concerns are often given more time or referred to another physician.
The way the symptoms of autism present as a child grows, the severity of each, and the amount of time a child spends in the doctor’s office, could affect a doctor’s ability to identify the need for an autism evaluation. Many times, parents are the ones asking questions, alerting their child’s doctor when they notice differences in their child or expressing their concerns over their child’s behavior.
When my oldest son was little, I missed signs and symptoms early on because, him being my firstborn, I didn’t know the difference between my unique child, and things that were neurodivergent. Our doctor never said anything, and since he was healthy and happy it was missed for a long time.
When the tests were finally done, I was terrified about him being labeled, and he had other diagnoses that were very pressing as well. It was a confusing time. We were wanting to make sure we did the best we could as parents, and set about putting therapies in place to help him.
Now, he is an 18-year-old young man with his own dog training business, the years of therapy and alternative learning methods changed his life. I saw my child thrive where he had previously struggled, and it was a beautiful thing to know that the world could finally see what I saw for so many years.
The first step in any autism evaluation is to educate yourself. Know the signs. Not just the most well-known, but the symptoms and the systems that are behind them. If you suspect your child may have autism spectrum disorder (ASD), talk to your child’s doctor. Ask for a referral to have an autism evaluation.
Early intervention can make a huge difference. I do want to say though, if your child is older, or even for adults, intervention is important–period. Don’t allow yourself to feel anything but proud that you are getting the support you and your family deserve.
Please know that a diagnosis doesn’t suddenly change who your child is, it only changes the trajectory of how you are able to meet your child’s needs. It is a “golden ticket” that opens doors to therapies, financial assistance, more personalized school options, and accommodations that can support them throughout their lifetime. It also can help put them into contact with other people who understand them, can befriend them, and can do the same for you.
What are the symptoms of autism?
It’s important to keep in mind that autism is a spectrum disorder. This means that the symptoms are a spectrum of behaviors and conditions, which are widely varied from person to person. Kind of like clothing, each person may dress differently, but their attire is all considered and recognized as clothing.
Diagnosing children with autism requires looking at a set of markers or symptoms and how severely they impact a child’s life. Young children may simply miss certain milestones, and the question remains to see if it is a delay, or if it is actually a symptom of autism. (One instance that comes to mind in this regard is, children not talking within the same age range as their peers.)
Here are some common symptoms that are considered for diagnosing autism according to CDC.gov.
Social communication and interaction skills
Examples of social communication and interaction characteristics related to ASD can include:
- Avoids or does not keep eye contact
- Does not respond to name by 9 months of age
- Does not show facial expressions like happy, sad, angry, and surprised by 9 months of age
- Does not play simple interactive games like pat-a-cake by 12 months of age
- Uses few or no gestures by 12 months of age (e.g., does not wave goodbye)
- Does not share interests with others (e.g., shows you an object that he or she likes by 15 months of age)
- Does not point or look at what you point to by 18 months of age
- Does not notice when others are hurt or sad by 24 months of age
- Does not pretend in play (e.g., does not pretend to “feed” a doll by 30 months of age)
- Shows little interest in peers
- Has trouble understanding other people’s feelings or talking about own feelings at 36 months of age or older
- Does not play games with turn taking by 60 months of age
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Restricted or repetitive behaviors or interests
Examples of restricted or repetitive interests and behaviors related to ASD can include:
- Lines up toys or other objects and gets upset when order is changed
- Repeats words or phrases over and over (i.e., echolalia)
- Plays with toys the same way every time
- Is focused on parts of objects (e.g., wheels)
- Gets upset by minor changes
- Has obsessive interests
- Must follow certain routines
- Flaps hands, rocks body, or spins self in circles
- Has unusual reactions to the way things sound, smell, taste, look, or feel
Most people with ASD have other characteristics. These might include:
- Delayed language skills
- Delayed movement skills
- Delayed cognitive or learning skills
- Hyperactive, impulsive, and/or inattentive behavior
- Epilepsy or seizure disorder
- Unusual eating and sleeping habits
- Gastrointestinal issues (e.g., constipation)
- Unusual mood or emotional reactions
- Anxiety, stress, or excessive worry
- Lack of fear or more fear than expected
It is important to note that children with ASD may not have all or any of the behaviors listed as examples here.”
How is ASD diagnosed?
Who can diagnose?
There are several kinds of professionals who can provide an ASD diagnosis. A professional who is specially trained and qualified should also have experience with diagnostic evaluations of ASD. You will be looking for one (or more) of the following:
- Child psychiatrist
- Child psychologist, when qualified
- Pediatric neurologist
- Developmental pediatrician
What does the autism evaluation process entail?
A full evaluation usually begins with a referral from your child’s pediatrician. The referral is often to see an autism specialist for further evaluation. The specialist will invite input from the parents, the child’s teacher, and other medical professionals who have worked with the family, in order to put together a comprehensive evaluation.
An autism diagnostic interview will begin the formal evaluation. The evaluation continues with the direct observation of the child with things taken into consideration such as:
- age of the child
- child’s behavior
- repetitive behaviors
- health history
- birth history
- child’s difficulties
- social skills/social interaction
- eye contact, or lack thereof
- child’s developmental history
There are tools that are used to help gather information and assess during a diagnostic evaluation, in order to come to a conclusion about autism spectrum disorder. Diagnostic tools can include:
- a childhood autism rating scale
- an autism diagnostic observation schedule (ADOS test)
- a social communication questionnaire
- a stages questionnaire
- a gilliam autism rating scale
- autism spectrum rating scales
Where will the tests take place?
Most often the tests needed for a diagnostic evaluation for ASD take place in the office of the doctor you are working with. Any tests needed in a hospital would be for comorbid diagnosis that often goes hand and hand with autism.
When will you know for sure if your child has ASD?
Be prepared to exercise patience. The waiting list can be long to get an appointment with an ASD specialist, or other professional. Some receive a diagnosis right away, others may need even further evaluation.
All these things affect the timeline, but each step of the way you pick up valuable insight and information. You may not be able to speed up the process, but you can make the process productive for you and your child.
How do they treat ASD?
Fortunately, autism spectrum disorder is not a disease and does not require treatment. Some children with ASD may have a comorbid diagnosis that needs medication or treatment, but autism itself is not something that needs treatment (at least not in the traditional sense).
However, some of the challenges that many children with autism experience can be alleviated through available treatment options. There are therapy options that can help children cope with some of their symptoms and overcome some of their challenges.
For example, some children with autism have selective mutism. Speech therapy with a qualified speech-language pathologist can help them communicate more comfortably and effectively.
Alternative teaching styles, accommodations (such as the ability to wear noise canceling headphones), and attending therapies, can all help children with ASD in school as well. School district leaders and teachers can help parents put these things in place.
There are different conditions that seem to be linked or have been linked, to autism. Your child may experience some of them. Testing may be needed to rule out other conditions or causes of symptoms that can make someone suspect autism.
For example, a visit to a mental health professional can help diagnose things like oppositional defiant disorder (ODD), obsessive compulsive disorder (OCD), or other mental health struggles that could affect your child.
Though separate from autism, other conditions may mirror the signs and symptoms of autism. An autism evaluation can help deduce what exactly is going on with your child, and get them the resources they need.
Though it can seem overwhelming, especially at first, and autism evaluation can offer help, hope, and solidification of what a parent might feel is affecting their child. A child’s development can offer clues as to whether or not they may need an autism evaluation. Though the evaluation process can be time-consuming, to know, one way or another, is worth it.
An ASD diagnosis is a gateway to providing a lifetime of specialized care for your child. Your loved one’s diagnosis does not change who they are, it only changes other people’s understanding of them and their needs, and empowers all involved to continue to live their best life.