Autistic? Or Just “Quirky”?

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: S
tereotyped 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.)

But within these criteria, there’s a range of behaviors from subtle to blatant, and from minimal impact to major impacts on school and home

What does it mean to be a spectrum disorder?

When autism is described as a spectrum, tt doesn’t mean this (source)

not very

Or this (source)

a little tragic

It means something more like this:

An illustration of a circle where the "pie pieces" are labeled language, executive function, etc. and dots indicate where the person might have more strengths vs. more difficulties

(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:

GAO

And says that “the type and severity of characteristics varies from person to person.”

Picture1

C.L. Lynch on theaspergian.com uses this illustration

spectrum

Then gives a few examples of how this would apply for an individual person.

spectrum 2

I don’t know which one of these graphics might be helpful for you, but I find it very helpful to think of these more nuanced descriptions 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, during her sophomore eyar of college. For her, the diagnosis 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 the 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 extra support. 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 girls). I hope to help people learn more about what autism looks like and how to interact effectively 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 better” or “learning to act normal.” We figure out what accommodations they need to move through the world, and to 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, isn’t 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 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?” Learn about how you can 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 have not vetted all these resources. If I discover materials that approach autism as a terrible disease to be cured, or focus on ways to “fix” our autistic kids, I set those aside. 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).

And for your child, here’s my list of Children’s Picture Books about Autism and other “quirky kids” stories. Seeing themselves reflected in a book might be helpful for them.

 

Talking to Kids about Earthquakes

rabbits-in-a-hole-earthquake-drill-for-preschool

If your child has recently experienced an earthquake, or they heard about one on the news or in a story, they may have questions, or you may want to take the opportunity to teach them safety skills. We want to focus on how to prepare… not scare.

My general approach when talking about any topic that might be scary for a child is:

  • Talk about how likely (or unlikely) this thing is to happen.
  • Address: Can we predict it? Can we prevent it? Can we at least take steps to prevent it from being a big problem?
  • Explain to them how they would know this thing was happening.
  • Teach what they could do if it happened, in order to make things better.
  • Talk about what the grown-ups around them would do to make it better.
  • Reassure them that even if bad things happens to people, people are tough and resilient, and pull together and make it through.

So, let’s walk through questions your child might have:

How Likely Is an Earthquake?

In many parts of the world, the answer is extremely unlikely. In other parts of the world, it’s quite likely your child will experience many earthquakes over their lifetime. I think you can be honest about your situation. If the likelihood is low, that can be very reassuring for your child to know. If the likelihood is high, we acknowledge that and then we focus on how we prepare and how we learn about earthquakes so we can respond if and when one happens.

Can you predict or prevent an earthquake?

You can’t.

Many people say “and that’s what makes it so scary!” It’s normal to feel that way, but that’s not the way to talk to your kids about earthquakes. Say “We can’t do anything to prevent them, and we can’t really predict when one is coming. So instead of worrying about that every day, we just make a plan for what we’ll do if or when one happens. And every once in a while, we practice how to respond.”

How will I know if there’s an earthquake?

Many adults leading earthquake drills for kids teach what to do, but never stop to think about whether a child would  know when to do those things. We can’t assume they would know that an earthquake was happening. It’s important to describe what an earthquake might feel like, using non-scary descriptions. I’ve said things like “If you’re sitting down, it may feel like someone is holding onto your chair and shaking it back and forth. If you’re standing up, you’d start feeling all wobbly, like you’re in a bounce house and the other kids are bouncing a lot.” If you’re ever in a situation where there’s a similar sensation, point it out: “Wow – when everyone in the stadium stomps their feet, it feels almost like an earthquake.” “The way the bridge at the playground sways back and forth sort of reminds me of an earthquake.”

After a recent 4.6 earthquake in Seattle, here are some descriptions people shared: “At first, I thought it was the dog bumping against the bed.” “It was like being in one of those coin-operated beds that wiggle and shake.” “I heard the dishes rattling.” “My dog started barking just before it happened.” “My cat freaked out and bolted out of the room.” “I thought it was a really loud truck driving by.” “There was a big rumbling booming sound like thunder, then my whole house shook for about 20 seconds.” “I thought one of my kids was shaking the bed.” There were also LOTS of people (including my whole family) that slept through the quake and never noticed anything!

Sharing descriptions like these will hopefully illustrate to your child what it might feel like so they can recognize it, but do it in a non-frightening way.

What you DON’T want to do: don’t go online with your child sitting next to you and search for photos and videos of earthquakes. This can be frightening out of context. If they’ve already seen scary images, you’ll need to reassure them and remind them that a news station will always search a whole city for the single most scary image to share. For example, in Seattle, we had a 6.8 quake, and if you looked at the news, it would show a collapsed brick building in downtown Seattle.  But that was the only collapsed building in town. It did not show photos like one my husband took of the worst damage at Microsoft campus, which was of the drink cooler that came open and spilled 20 cans of soda down to roll around on the floor. So be honest with your child, and say that yes, bad things can happen in an earthquake. But it is more likely that they won’t than that they will.

Let your children know that sometimes an earthquake only lasts a few seconds, and you’re not even sure you felt it. Other times it may last long enough for you to take action to protect yourself.

What should they do if there’s an earthquake?

Teach your child this basic method:

  • DROP down onto your hands and knees (before the earthquake knocks you over). This position protects you from falling but allows you to still move if necessary.
  • COVER your head and neck (entire body if possible) under a sturdy table or desk.
    • If there is no shelter nearby, crawl away from windows and things that could fall on you, covering your head and neck with your hands.
  • HOLD ON to your shelter (or continue covering your head and neck) until the shaking stops. Be prepared to move with your shelter if the shaking shifts it around.

A Children’s Book about Earthquake Response

I’ve written a children’s story book to teach this method: It’s called Rabbits in the Hole: A Story about Earthquake Preparedness, and you can download it by clicking on that link

Some additional guidance for parents

This is more than you would teach kids, but it’s worth knowing. (Source for recommendations.)

If you’re with your child, when they drop, cover and hold, so do you. But you cover over them with your own body, and then cover the back of your neck with one hand.

If you are driving: pull over, stay in your car with your seat-belt buckled (and your child buckled in their car seat) until the shaking stops.

If you’re in bed, stay in bed! Lay facedown, cover your head and neck with a pillow and your hands.

What NOT to do:

  • Do NOT stand in doorways. In modern buildings, the doorways are no stronger than other parts of the house. You are safer under a table.
  • Do NOT try to run outside or run around inside the building. Although it is safer to be near an interior wall, away from windows, it’s not a big enough benefit to risk running to another room during an earthquake. It’s better to drop, crawl a few feet to the safest space, cover, and hold.

What Will the Grown-Ups Do?

Explain to children that during an earthquake, if a grown-up is nearby, they will help to shelter the child by putting their body over the top of the child. If the grown-up is not nearby, the child should still drop, cover and hold right where they are and trust that as soon as the shaking is over, their caregivers will come to them as quickly as possible.

After the shaking, the grown-ups will help to make sure everything is safe around them, and they can help by staying calm and listening well to what they’re told to do. If there’s anything that could be dangerous or needs to be fixed, the grown-ups will help to figure that out.

Don’t expose your young child to pictures of cities devastated by earthquakes. That will only frighten them, and that level of damage is beyond their control and ours. If they have seen those pictures, acknowledge that this is possible and it’s tragic, but it’s not likely to happen to them.

Do talk about (or show pictures of) damage that is challenging but manageable. Good ones might be of a grocery store – there may be big spills and some broken glass that the grown-ups would need to take care of, but soon everything will be set back to right.

If you have a story of someone your kids know who experienced an earthquake but everything turned out OK, that’s a good story to tell. (In general, it’s a helpful lesson for children to hear that challenging things can happen to people, and they can be OK. That actually teaches resilience better than telling your kids that nothing bad will ever happen to them.)

I tell stories about the two biggest earthquakes I’ve been in (a 6.8 and a 5.1): in one, we were at a children’s theatre watching a play about Winnie the Pooh, where they were talking about taking the bounce out of Tigger, then the room started bouncing – we all thought it was a special effect at first! We were asked to evacuate the theater after the earthquake, and everyone left calmly, and we went home, so the sad thing was that we didn’t get to see the end of the show, but we were all OK, and our families were all OK. Some people had a few broken things in their house, but nothing too big. The other time, we were at Disneyland watching Fantasmic, and as the pirate ship came around the bend, things started swaying and rumbling. Again, it felt like a special effect. But then they stopped the show, turned up the lights, and asked us to leave the park. So, we didn’t get to see the end of the show, but we did get to calmly evacuate through the back part of the park (the employee areas no one is ever allowed to see) which was super interesting, and we went back the next day and everything was OK. They did have some aftershocks, so after each one, they would close the ride, quickly inspect it, and then go right back to having fun.

Telling a story like this, or any story you know, can help to teach that earthquakes can be a big problem, but more often, they are totally manageable if we stay calm and know how to respond.

More Resources

Outdoor Theatre 2019

Kitsap Forest Theatre, www.foresttheater.com/

Kitsap Forest Theatre, http://www.foresttheater.com/

Outdoor productions of Shakespeare and other plays are a fun way to experience the arts in the summer time. Bring a picnic, spread a blanket out on the grass, and enjoy! (If you prefer sitting in a chair to on the ground, be sure it’s a low profile chair so you don’t block anyone’s view.)

Although you can see Shakespearean tragedies outdoors, I personally prefer big, rollicking shows outdoors – the comedy and music play better in situations where there are Frisbee players in the far distance, dogs sniffing by, and airplanes flying overhead.

Outdoor theater is a good venue for kids because it gives more leeway for squirming and wiggling than an indoor performance with theater rules. However, you should still endeavor to keep kids quiet and well-behaved. Most of the shows listed here are good for ages 7 or 8 and up, but I would save King Lear and Henry IV for teens and up. We have brought preschoolers to shows, but we don’t expect them to pay full attention – bring snacks, toys, and sticker books to entertain them quietly.

Seattle Area:

July 13 and 14 is the Seattle Outdoor Theatre Festival in Volunteer Park in Seattle, which features performances from Wooden O and Greenstage (see above) plus Last Leaf, Theatre Schmeater, Shakespeare NW, 14/48 projects, Versatile Arts, Dacha, Freehold, and Young Shakespeare Workshop. This year, they have several performances labeled “Kids Show!” Free, please donate to support it!

Greenstage Shakespeare in the Park is performing Henry IV, part 2 and Taming of the Shrew this year in Burien, Fall City, Lynnwoood, Maple Valley, and Seattle; their smaller scale Backyard Bard performances are of Merry Wives of Windsor and Measure for Measure at various Seattle parks. Season runs July 12 – August 17. Free, please donate!

Outdoor Trek becomes Outdoor Star Wars… For the past several years, Hello Earth has performed live an episode of Star Trek The Original Series. Simple props like hula hoop and streamer transporters are surprisingly effective and always entertaining. Last year they did Star Wars – A New Hope (R2-D2 on roller skates!), so of course this year is Empire Strikes Back.   Blanche Lavizzo park in Seattle. August 3 – 25. Free. (Donate!!) Schedule here.

Snoqualmie Falls Forest Theatre sadly is not doing a production this year.

Theater Schmeater. 5 performances, July 13 – August 15. Fabulous Fable Factory – The delightful story of an inquisitive youngster who discovers an old factory operated by Mr. Aesop. Seattle parks, free.

Wooden O is doing  Romeo & Juliet (featuring a female and non-binary cast) and Twelfth Night (all male cast). Thurs – Suns: July 11 – August 11. In Bellevue, Des Moines, Edmonds, Federal Way, Issaquah, Lynnwood, Mercer Island, Sea-Tac, Seattle, Tacoma. Free but please donate!

Day Trips or Overnights

Island Shakespeare Festival – Langley. July 5 – September 1. Thursdays – Sundays. Midsummer Night’s Dream, Winter’s Tale, and Inferno (info TBA). Free. (Donate!)

Kitsap Forest Theatre (near Bremerton) is doing Mamma Mia. (They did  Newsies on the weekends from Memorial Day to Father’s Day.) Saturdays and Sundays 2 pm, July 27 – August 18. $34 adults, $18 youth, 6 and under free.

Leavenworth Summer Theatre is presenting Sound of Music, Pirates of Penzance and Hello Dolly. July 6 – August 30, Tuesdays – Saturdays. $14 – 35.

Skagit River Shakespeare Festival (near La Conner, SW of Mt. Vernon). They’ve not yet announced a 2019 season.

Other Summer Arts Opportunities

Library Summer Reading Programs

Library programs for ages 3 – 12 happen all summer long, and include story time and much more.

King County library:  This year’s theme is space themed so the shows are about space, the stars, and science. Go to this page https://kcls.bibliocommons.com/events/search/index, and you can filter for events that work for you, or type the name of a show you want to see into the search bar at the top of the page. Some shows to consider: the Story of the Stars puppet show, Space Dog, and Jammin on Jupiter.

The Seattle Public Library summer reading theme this year is “Explore Your World.”

Movies

I have a full post about cinema morning movies, outdoor movies in the parks, and drive-in theaters: https://gooddayswithkids.com/2019/06/23/summer-movies-2019/

Concerts:

Red Tricycle has already assembled this great Guide to Free (and Cheap) Summer Concerts. It includes info about kid-friendly concerts – some free, some pricey. At the Ballard Locks, the zoo, Issaquah’s Spring Free trampoline, U Village, downtown Seattle, Seattle Center, Chateau Ste. Michelle, Kirkland, Issaquah, Sammamish, Everett, Kenmore, Redmond, and Tukwila. Also check out ParentMap’s listings: www.parentmap.com/article/outdoor-summer-entertainment-for-families-seattle-eastside-north-sound

Other Activities for Kids in the Seattle area:

If you’re looking for other fun ideas for the summer, check out my series on “Cheap Dates with Toddlers and Young Kids”,  or reviews of Eastside Parks or find hands-on STEM enrichment activities for kids age 3 – 7 at www.InventorsOfTomorrow.com.

For school year activities, if you have kids age birth to 7, check out info about info about fabulous classes at local community colleges that are great for kids AND include parent education for you,- register now before they fill up!!