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One of the most frequently asked questions from my readers is “How do I know when to ask my pediatrician to evaluate my child for autism?” It can be difficult to know when to ask for an evaluation, because many of the outward signs of autism can be similar to other delays, disabilities or medical issues.
What is Autism Spectrum Disorder?
Autism Spectrum Disorder (ASD) is a developmental disability that begins in early childhood and lasts throughout a person’s life. Some medical professionals have previously called ASD autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. These conditions are now all called Autism Spectrum Disorder.
Because of the range and severity of symptoms, autism is a spectrum disorder. The fact is, individuals can be affected by ASD differently, which is why the DSM refers to ‘levels’ when evaluating a child for autism. The levels speak to the functional levels of an autistic person, and it is used to identify the kind and range of support that person requires.
Autism Spectrum Disorder can cause significant social, communication and behavioral challenges. You can’t tell by looking at a person whether or not they are autistic, however, an autistic person may communicate, behave, interact or learn in ways that are different from most people. Autistic people may have challenges with learning, thinking and problem-solving, whereas some may have savant-type gifts.
Clear as Mud
If you’re a parent with concerns, wondering whether you should ask your pediatrician to evaluate your child for autism, this description can be about as clear as mud.
What I tell parents is – trust your gut. If you believe your child needs to be evaluated, sound the alarm. Don’t stop until you’ve scheduled an evaluation. Whether the underlying diagnosis is ASD or some other developmental delay, the sooner it is identified and support services are put into place, the better. That’s because early intervention supports your child in learning to become more independent with everyday tasks and functions.
Signs of Autism
The CDC lists signs of Autism Spectrum Disorder, which can help you to decide whether to ask your pediatrician to evaluate your child:
- not point at objects to show interest (for example, not point at an airplane flying over)
- not look at objects when another person points at them
- have trouble relating to others or not have an interest in other people at all
- avoid eye contact and want to be alone
- have trouble understanding other people’s feelings or talking about their own feelings
- prefer not to be held or cuddled, or might cuddle only when they want to
- appear to be unaware when people talk to them, but respond to other sounds
- be very interested in people, but not know how to talk, play, or relate to them
- repeat or echo words or phrases said to them, or repeat words or phrases in place of normal language
- have trouble expressing their needs using typical words or motions
- not play “pretend” games (for example, not pretend to “feed” a doll)
- repeat actions over and over again
- have trouble adapting when a routine changes
- have unusual reactions to the way things smell, taste, look, feel, or sound
- lose skills they once had (for example, stop saying words they were using)
Difficulty with Diagnosis
The difficulty with and ASD diagnosis, especially at a very young age, is that some of these symptoms overlap with ADHD, sensory processing disorder, central auditory processing disorder, and more. I often explain to people who ask that helping my daughter is like peeling an onion. There are so many layers and each time we peel it back, we expose something new.
Additionally, ADHD paired with autism can look like severe ADHD. That’s what happened when my daughter was 5 years old. We were told she had “combined type” ADHD, which means that she was both inattentive and impulsive/hyperactive.
At 18 months old my daughter wasn’t talking. Believe it or not, she said her first words at 7 months old, and after that, we didn’t hear a peep.
I remember my pediatrician telling us to ‘wait and see,’ and that ‘once she started talking, the flood gates would open.’ (Spoiler alert: that is NOT what happened).
My advice to parents is to get a second opinion and don’t stop until a professional adequately evaluates and addresses your concerns.
ASD is not curable. It’s a lifelong condition, however, research shows that children who receive early intervention services can improve development. Early Intervention Services refers to therapies offered that help children from birth to 3 years old learn important skills. These include talking, walking and interacting with others.
Additionally, parents with autistic children may seek out Applied Behavior Analysis (ABA) therapy. This is a controversial topic in the actually autistic community, but ABA has a history as a recognized therapy for removing socially and physically harmful behaviors, including behaviors associated with ASD. This is an intervention that is covered by some health insurance programs.
Keep in mind that even if your child isn’t diagnosed with ASD, they may present with developmental delays in one or more areas, which qualifies them for early intervention. The Individuals with Disabilities Education Act (IDEA) says that children under the age of 3 years (36 months) who are at risk of having developmental delays may be eligible for services. These services are provided through an early intervention programs in your state, where you can request an evaluation.
Although ASD is not curable, there are several holistic and natural supports in addition to medical that may support your child with many facets of delayed development or co-morbid conditions: positive reinforcement/behavior, sensory integration, gut health, learning disabilities and more.
Healing stomach pain and gut health is a big part of our personal ASD journey, and we continue to work hard on healing and see improvements. We also continue with PROMPT speech therapy. Like many parents, I’ve read many (many) articles to look for cutting edge (and safe, non-invasive) supports along the way. Always keep a sharp eye out for snake-oil salesmen that promise a “cure” and instead, favor information that comes from peer-reviewed research.
I also recommend reading blogs from the #actuallyautistic community, because no one will give you a better view than someone who is living it. One of my favorites? Hunter at The Life Autistic. I love his real and humorous approach to everyday life. His blog gives me hope for my daughter’s future.
I continue to look to the future. I refuse any sentence about my daughter’s abilities that ends with a period and not an ellipsis…
Just like Natasha Bedingfield sings: “Today is where your book begins
The rest is still unwritten.”
A Mom’s Guide to the Nemechek Protocol
4 Diets that Support Autism
Starting a Gluten Free Diet
Prompt Speech Therapy
Is it a Scam?
15 things I wish I’d Known as a new Special Needs Parent
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I wish we had gotten better advice from Ben’s pediatrician. She told us he couldn’t be evaluated until he was three years old. We knew something wasn’t right when he was one year old.
I second your advice to get a second, third… tenth opinion. Keep going until you get answers! Ben lost out on early services that might have made things easier for him, and for us.
It makes me sad (and angry) that this story is so common. I hear from so many parents who have a similar story, and it just shouldn’t be. I’m so thankful to have found all of you fellow parents and bloggers — our voices and stories matter.
I’m very happy to have found an online “tribe” too! Those early days were so isolating. I was so relieved to find that others understood things like hiding all the knives, or duct taping diapers😂 …or those times when you feel like the biggest failure after a meltdown.☹
And the hope from families a little further down the road, that things DO change. Eventually 😉😂
Our diagnosis was life changing. It was awfully late (13) so we didn’t get any early intervention benefits, but it changed our (parental) expectations which made all the difference in the world. Everything fell into place. We’re a much happier family.
I love this story – it shows that it is never too late, and that the diagnosis makes a difference. I remember when my youngest learned she had ADHD – it was such a relief – she finally understood why her brain worked the way it does, and we shifted our approaches to fit her needs.