Recently, I’ve had multiple discussions with parents who are wondering whether their child is autistic, wondering whether they should have them tested, and receiving testing results of “well, we can’t say it’s autism, but we also can’t rule out autism.” I’ve also had conversations with colleagues about children in their classes, where they’ll wonder about a child’s unusual behavior, but also say “but I don’t think they’re autistic, because there’s these other things they do well.”
It’s tricky to figure out what to do about these “maybe?” cases, and trickier still when parents see that their child has challenges, and think they would benefit from support (like occupational therapy or ABA therapy) but their insurance won’t cover it unless they have the diagnosis.
The Autism Diagnosis
When I was a kid, we tended to think of autistic people as ones who showed significant impairment in multiple domains: non-verbal, developmentally delayed, frequently stimming (e.g. rocking). Then there were a bunch of other kids who were skilled in many areas, but had some unusual behaviors. We called them “quirky” or “odd ducks” or said they “march to the beat of their own drummer.”
Then the term Asperger’s syndrome appeared, and was often applied to kids who were gifted and “quirky.” And we would talk about people in terms of “where are they on the spectrum” or “are they low functioning or high functioning?”
Now, Asperger’s is no longer a distinct diagnosis. It’s been pulled under the umbrella of Autism Spectrum Disorder (ASD).
The criteria for an ASD diagnosis in the DSM-V are:
A) Persistent deficits in social communication and social interaction (deficits in social-emotional reciprocity, in nonverbal communicative behaviors used for social interaction and in developing, maintaining, and understand relationships) and
B) Restricted, repetitive patterns of behavior, interests, or activities (as manifested by at least two of: Stereotyped or repetitive motor movements, use of objects, or speech; Insistence on sameness, inflexible adherence to routines, or ritualized patterns of behavior; Highly restricted, fixated interests that are abnormal in intensity or focus; Hyper- or hyporeactivity to sensory input.)
What does it mean to be a spectrum disorder?
It doesn’t mean this (source)
Or this (source)
It means something more like this:
That image comes from this great comic on “Understanding the Spectrum” by Rebecca Burgess – I highly recommend reading it.
This graphic (source) breaks the spectrum into five categories, similar to Burgess, though the colors and the way they break things out are a little different:
And says that “the type and severity of characteristics varies from person to person.”
C.L. Lynch on theaspergian.com uses this illustration
Then gives a few examples of how this would apply for an individual person.
I don’t know which one of these graphics might be helpful for you, but I find it very helpful to think of these rather than a single axis of “a little quirky” to “tragic.”
I know that if someone asks me if my son is “high functioning” or “low” or asked “how autistic is he”, I would find it difficult to answer those questions. It’s much easier to tell you – “here are the things he’s good at, here are some behaviors he does that might seem odd to you but don’t harm anyone or anything, and here are some challenges he has and some accommodations you could make that might help him to manage them.”
To Test or Not to Test
I have been a childbirth educator for over 20 years. In that field, we often say – before you get a test, think what you will do with the results and how it will be helpful to you to have the results.
If you are a parent deciding whether to test, or an early childhood professional deciding whether to refer for testing, it’s worth asking that same question.
If there are services that you believe that your child would benefit from that they can only access if they have a diagnosis, then you should get your child tested. If it would be helpful to you as a parent to have a “label” that helps you better understand your child and learn more about what they need, then it’s worth getting them tested to learn more from a professional, whether that’s a diagnosis or just resources for more ideas and support. My daughter chose to pursue a diagnosis at age 20, and for her, it came as a relief, because in the past, it was easy to think her “quirks” were her fault and she should be able to fix them herself. Once she had the diagnosis of autism, she was better able to accept that this is just who she is and it’s OK to ask for accommodations she needs to be successful.
I can share my own experiences about decision making for my youngest: As a parent, I suspected something was unusual about him from when he was about six months old – when he got overstimulated, he’d bump his head into things or have meltdowns. When he was a toddler, he would perseverate on things – like during one gymnastics class where he told his coach “I am an ankylosaurus” at least 20 times. He had singular obsessions – like the month where he wanted nothing but Cat in the Hat, or the periods where he only wanted to talk about the planets and could easily be calmed by just handing him 8 objects and asking him to decide which one was Mercury, which was Venus, and putting them all in order.
However, he didn’t fit some key stereotypes of autism: he’s very verbal, OK at eye contact, and seeks out social connections. So no professional ever told us that we should seek an autism diagnosis, but I suspected that was where we would be someday.
I learned about autism and sensory processing disorders, and what accommodations help kids with those challenges, and I just did all those things for him. We chose preschools and activities that were a good fit for him, not ones that we knew would push his buttons. We didn’t have him tested yet, because having results wouldn’t have changed anything about what we were doing.
However, when he started kindergarten, things got more challenging. Luckily his kindergarten teacher was fabulous with him and just naturally did the accommodations he needed. But all of school didn’t accommodate as well. So, at that point, we had the testing done, and received an autism diagnosis, and that has made it easier for us to access the services he needs. For school, he has an IEP which ensures he gets the extra services he needs. And now our insurance will cover OT and ABA services for him due to the diagnosis. Those are the upsides of having the official diagnosis. (There is a minor downside… some summer camps and other programs say they can’t take children with autism or can only take a limited number, so there are some programs that are no longer an option for him. Not a big thing, but worth mentioning.) So, doing the testing when we did worked out for us. Your needs may be different.
To refer or not to refer
As a parent educator, I observe the kids in my class. I had one toddler where I had no doubt she was on the autism spectrum and would benefit from early and intensive services. I spoke to that parent early in the year, encouraged her to seek testing, and got her connected to services.
I’ve had lots of other students who were “quirky.” I do developmental screenings in my toddler classes, and this can start the conversation with parents about developmental issues – if it’s a minor delay in one area, I just talk about ways to enhance learning in that area, but if I see more delays, we have a broader conversation about what might be going on there. So far, I have not had another child that I told the parents specifically that they should have them tested for autism now. But, I have shared “here are some things about your child that are a little different than what we see in other kids their age. It could just be a temperament thing or just where they are in their development, but it does make me wonder a bit, so it’s something you could keep an eye on, and check in with me again if it becomes a concern.” I do mention the word autism, because I’ve spoken to parents of 7 year olds who have said things like “I can’t believe no professional we worked with ever mentioned the word autism to us before last month. If anyone had the courage to have that conversation with us, we could have learned more about accommodations that would have helped us parent him more successfully and access services earlier.”
In my classes, I share my story of having two kids with an autism diagnosis (My older daughter was not diagnosed till age 20, because autism is different in girls and more difficult to diagnose especially for gifted kids). I hope to help people learn more about what it looks like and how to interact with autistic people.
I also talk about autism differently than the common dialogue. Autism is often treated as a tragic thing. I think it’s better to just think about it as a disability which creates some challenges but can also be accommodated. If a child is blind, or deaf, we don’t expect them to be able to change that, just by “choosing to behave” or “learning to act normal.” We figure out what accommodations they need to move through the world, and maximize their potential for a successful life. It’s an accessibility issue.
Autistic people also have unique strengths. For example, many have intense attention to detail, a high degree of persistence, and ability to analyze data. And “Sometimes being autistic means that you get to be incredibly happy. And then you get to flap. You get to perseverate. You get to have just about the coolest obsessions.” (Source)
The Autism Self-Advocacy Network recognizes Autism Acceptance Month, which “promotes acceptance and celebration of autistic people… making valuable contributions to our world. Autism is a natural variation of the human experience, and we can all create a world which values, includes, and celebrates all kinds of minds.”
A Note on Co-Morbidity and Social Issues
Autism also has several co-morbidities: conditions that often occur with autism. “Over half of autistic youth [also had] attention deficit disorder (53 percent) or anxiety (51 percent), nearly one quarter had depression, and 60 percent had at least two comorbid conditions. Other common comorbid conditions include sleep disorders, intellectual disability, seizure disorders, and gastrointestinal ailments.” (Source) Many of the challenges we think of as related to autism actually come from these co-morbidities. We should think of them as separate issues and handle them separately.
And many of the “challenges” of autism actually come from societal attitudes toward autism. For example, if a child jumps up and down with excitement, is that really a problem behavior that needs to be corrected? If a teenager gets overwhelmed by noises, so chooses to wear noise-canceling headphones in many situations, is there a reason anyone else should care about this? If someone can’t stand it when the different foods on their plates touch each other, is it easy to use just a little extra care when dishing them up instead of using a lot of energy telling them that “they just have to learn to cope with that.” If the neurotypical community understood more about neurodiverse people, it would greatly reduce the “challenges of autism.”
Screening and Diagnostic Testing
If you’re wondering about your child, or a child you know, start with this list of symptoms, or red flags to watch for. https://www.cdc.gov/ncbddd/autism/signs.html
If you’re still concerned, use a screening tool:
- If your child is 16 – 30 months old, try the Modified Checklist for Autism in Toddlers, available at www.autismspeaks.org/screen-your-child
- For birth to 6 years, use the ASQ-SE – Ages & Stages Questionnaire
- You may find other helpful tools here, such as AQ and CAST. https://www.autismresearchcentre.com/arc_tests
If you’re still concerned, talk to your child’s health care provider, and/or contact your state’s public early childhood system to request a free evaluation to find out if your child qualifies for intervention services. This is sometimes called a Child Find evaluation. If your child is under three years old, look at the ECTA website. If your child is 3 years old or older, contact your local public school system.
In King County, Washington, some resources for diagnostic testing include: Kindering (especially for kids under age 3), UW Autism Center (this is where my daughter was tested at age 20), and Seattle Children’s Autism Center. Some private practice psychologists also offer testing. For example, our son was tested by Heather Davis at Brook Powers Group, who had worked with him in their Incredible Years program.
Here is a podcast with tips for what to do when you’re waiting for an autism diagnosis or a PDF on the same topic.
What if they’re NOT diagnosed as autistic?
If your child has been tested for autism, and the diagnosis was “we can’t say it’s autism but we can’t rule it out” you’re in a bit of a bind.
If you feel your child needs services now and you can only access them if you have a diagnosis, you may have to do a fair amount of advocacy. Know that some clinics will refuse families who have already had an evaluation elsewhere – they worry that some parents may just be shopping around for someone who will give them the diagnosis they want and that wouldn’t be in the best interest of the child.
If it is possible for you to wait to pursue a diagnosis, that may work out better. In the meantime, you can learn more about autism, sensory processing disorder, ADHD and other issues. You may discover that there is a description that is a better fit for your child. However, I personally don’t find it helps most people to become overly focused on pursuing a diagnosis – an answer to “WHY is my kid different than other kids.” Instead, you may find it more helpful to think: “given that my kid is who they are, what can I do to help support them.” How do you accommodate them so they’re not under continuous stress and pressure, while still giving them appropriate challenges so they learn and grow and reach their potential. A few months or a few years down the road, you may discover that they moved through a phase, and are now doing well in school and social occasions. Or, you may discover that things have gotten more challenging for them, and more professionals are on board with a diagnosis, given more evidence.
Resources on Autism and Accommodations
There are lots of resource guides from various organizations. Try these from the Seattle Children’s Autism Center, Autism Parenting Magazine, and the AAP. Plus these communication resources. Note: I personally avoid any materials that approach autism as a terrible disease to be cured, or focuses on ways to “fix” our autistic kids. I choose materials that talk about autism as a neurological difference that shapes who they are and how they interact with the world, and talks about ways we can increase accessibility for them.
This article is short and helpful: 15 Behavior Strategies to Help Children with Autism.
If handling discipline is an issue for you, I recommend the Incredible Years program. (We worked with Shanna Alvarez in Seattle, who was fabulous.) While the parents meet, the kids attend “Dinosaur School” which teaches social and emotional skills. Note: my Discipline Toolbox is highly influenced by what we learned at Incredible Years.
If emotional regulation is a challenge for your child, check out my post on Big Feelings and the Zones of Regulation approach.
There are helpful resources at https://brightandquirky.com which has webinars with leading experts on how to support kids who are gifted and autistic (or have other behavioral issues.
For your child, here’s my list of Children’s Picture Books about Autism and other “quirky kids” stories.