Autism: Not Always What You Think
Updated: Sep 2, 2022
Autism. A word almost everyone has heard of, and a disability most know (at least a little) about. But what does the world really know about Autism? Turns out, most people think they know what Autism is, but in reality, they have so much to learn! This includes doctors and therapists who work with Autistic children on a regular basis. Shocking, right?
There is still so much we don’t know about Autism, and because of the growing incidence (1 in 44 kids from the CDC’s most recent poll), there continues to be a great need for greater understanding of Autism. What we do know is… Autism covers a huge spectrum (range) of abilities and all of these kids are different. A very famous quote about Autism- “If you’ve met one child with Autism, you’ve met one child with Autism”, and this is oh so true. Because of this, many kids are missed by parents and professionals alike because there is such a huge range in the way kids diagnosed with Autism can present.
What do most people think about Autism? I often hear professionals state a child “does not have Autism” because they make good eye contact. They hug people. They can talk or they are smart. They play with other kids. They pretend to make a sandwich. They don’t cover their ears. They enjoy being around other people and want to make friends. They don’t act like “Rain Man”. They have empathy or don’t have meltdowns, etc.
What most people don’t realize, is that all of those statements are stereotypes and not all are true for each Autistic person. Kind of like how “all blondes are dumb”, or “all men are strong”. We know it’s bad to stereotype others, and yet many people still do this for Autism. I do not think this is done with malicious intent, but I do think people need to be more aware and knowledgeable, and most particularly people in the medical and education fields. If a child does not fit into this stereotype, a pediatrician or therapist will often tell a concerned parent a child does not even need an evaluation. When in fact, that is not always the case.
If I could say one thing to other professionals, it would be this: Do not tell a parent that their child does not have an Autism diagnosis unless you are trained and do a full Autism assessment. If a parent or anyone else brings up the word Autism- refer them for an evaluation to be completed by someone who does formal Autism assessments on a regular basis- even if you do not think it's needed.
The one thing we know is that early intervention is the key to the best possible progress, and many of these kids are missing out because they are not getting referred, even when the parent is concerned. If a child is assessed for Autism and it turns out they aren't Autistic- there was no harm done, and you will have valuable information about a child’s strengths and weaknesses. If they are diagnosed with Autism, it can open the door to many supports and interventions, can help a parent understand their child’s differences, and a child understand their own brains and why they are the way they are (which is NOT bad, wrong, or broken! It's a brain difference).
So what is Autism? Autism is a complex neurodevelopmental disability that is characterized by differences in three main areas: language and communication, socialization, and repetition of movements, preferences, routines, and/or differences in sensory processing. And that is Autism in a nutshell. But let’s break these down into smaller components. Note: There is no one thing a child could do or not do that would make me determine they are or are not Autistic- it is a pattern/constellation of characteristics.
Language and Communication: A child’s developmental history is a very important component when looking at language skills. If a child initially began talking and then lost language, I would highly recommend an Autism evaluation. Other kids might have always had a language delay. Also very common – “he had a speech delay, but after six months of speech therapy, his language went off the charts.” An Autistic child might repeat exactly what you say in the same tone you say it (echolalia), or repeat things they heard from a movie or commercial either immediately or at a later time (scripting). They may talk a lot, but in jaron (gibberish). They might have difficulty communicating their wants and needs, even though they are able to label items around them. They may have trouble using correct grammar including pronouns like I, you, he, or she. Children may use very formal use of language (may use large words that are unexpected for their age, or talk to a baby in the same manner they would talk to an adult). They may provide many facts about preferred topics, but have difficulty engaging in back and forth conversations about the topic- or have difficulty conversing about a variety of topics. Some Autistic kids may correct others often (sometimes adults when it may not be thought of as "appropriate" to do this). Some kids have difficulty with abstract language (like idioms) and take comments literally. Many Autistic kids have an unusual or melodic intonation or high pitched or robotic tone of voice, and some have difficulty controlling or monitoring the volume of their voice. Some Autistic kids do not use many gestures when communicating with others (such as pointing, using gestures to explain items' size/movement patterns). They may not change their facial expression often (flat affect), or may be very exaggerated in their facial expressions.
Differences in socialization: These differences can range from being seemingly unaware of or uninterested in others to interacting with others but with what are often referred to as “quirks”. Autism does NOT equal anti-social, and many Autistic kids are socially motivated and seek out contact with others. This may look different than neurotypical interactions, and could involve oversharing of personal information, being in others' personal space, or difficulty or differences with initiating and maintaining interactions with others. Most Autistic kids make eye contact at times, but it's common for this to not be maintained or may be used inconsistently for social purposes (such as lack of eye contact when pointing, asking a question, showing items, etc). Many Autistic have friends (who are often also neurodivergent, but not always), and for those that do not, they may want friends, but just do not have good strategies for making and maintaining friendships - especially with neurotypical peers. Some kids want to play with others and often play games like tag with their peers. They may be able to express their emotions and recognize emotions in others, and they may not. A common difficulty in kids that are ‘missed’ is talking often about their preferred topic, "dominating" conversations (not recognizing nonverbal hints that a person wants to talk), and having difficulty taking turns. Autistic kids may make what appears to be abrupt or tangential topic changes. Many have strengths in their ability to answer questions, but either not ask questions about others’ experiences, or may not follow up on a question they asked. Here’s an example:
Kid A: What did you do yesterday? Kid B: I went to the zoo and saw the coolest thing! Kid A: I read a book about the Empire State building and it is 1,454 feet tall.
Neurotypical communication would signal Kid A to ask a question to follow up with what Kid B said, "what did you see?"
Repeated Movements/Interests, and Sensory Difference: This area actually covers a whole lot and often looks very different from person to person. It could be repeated play or play routines (preferring to play with the same toy over and over, lining up objects in a row, copying a play scene over and over), repetitive speech (saying a word or phrase more often than would be expected), as well as special interests (prefers to talk about or play with things to the exclusion of others: trains, maps, letters, Minecraft, dinosaurs, squishes, Frozen, and many more, this could be anything!). These kids may know the whole alphabet, but struggle asking for things they want. Many Autistic kids play in a way that is different than neurotypical kids - so don't engage in play with toys in their intended use (often called functional play) and/or pretend play, but some Autistic kids have great imaginations. Some kids may focus on parts of toys like the wheels of a car instead of making it race and crash. This category can also include flapping of arms, rocking one’s body, spinning, covering ears to loud sounds, looking at items closely or from the side. It can be disliking having one's hair cut or nails trimmed, being a selective eater, enjoying hard touch like hugs and crashing into things or avoiding touch, or could be disliking tags in their clothes. Kids might become very upset it their routine is changed, may insist on doing things the same way over and over, or may insist on carrying a specific item with them at all times.
While not a core characteristic, many Autistic kids have differences in how they behave. Many parents report their child becomes very upset for no reason, or might have “meltdowns” for long periods of time. This is often due to the core characteristics like difficulty with communicating, or become dysregulated due to changes in routine (meaning there is an underlying reason for their upset or actions, it just may not be clear to adults). Currently, more boys than girls are identified with Autism, but with knowledge of Autism growing, we are beginning to realize many girls present differently than boys and as a result have gone unnoticed or misdiagnosed. Many Autistic girls (or AFAB people) have significant anxiety and might become upset easily. Girls also tend to have preferred topics that are ‘girly’ and seem more appropriate (animals, lip gloss, shoes, princesses). They are often socially motivated and with groups of other girls, and also mask or imitate others to fit in.
This information is based off of my experiences as a speech therapist and Autism evaluator. It's important for parents to know that many signs and characteristics are subtle and can be missed by parents and professionals alike, so keep in mind online checklists are not always the most accurate way to get information.
Hopefully the information in this post will give you a better understanding of what Autism is and what it can look like in different children. If you have concerns in two or more areas listed above, I would highly recommend that you seek an evaluation to determine if an Autism diagnosis is approrpiate for your child. If your child is 3 and above, you can request your local school district complete an evaluation for free (in most states in the US).
If you are interested in learning more, check out my Autism Handbook to learn more about Autism from a Neurodiversity affirming point of view. Click here for the professional/sharable version and here for the parent version. I share about Autism as well as give tips to work on speech and language regularly on my Facebook and Instagram pages, so be sure to follow me on social media!