Tag Archives: child development

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.

 

Wait for it…

img_20160922_162421614

As a parent educator, I often tell my students: we can’t make our children do something before they’re developmentally ready. We can encourage them, provide opportunities to try a new skill, model behavior, try praise and punishment to motivate them, and create an environment that encourages them to master that skill. But sometimes, we just have to wait for them to be ready.

Sometimes when it comes to raising my own kids, the advice I give to other parents just flies out of my head…

Just 4 weeks ago, I was despairing that my child would ever want to write or draw anything. He is five years old, and was about to start kindergarten. Yet, I could count on one hand the number of times he’d attempted to draw a picture. The only time he would write was if we made him do it to earn something. “Want a chocolate Kiss? OK, write the word kiss and you can have it.” His grandma started paying him a penny for every letter he writes for her, and despite that, he didn’t write much.

This is in stark contrast to my older kids, but especially to my daughter who started drawing and trying to write when she was less than 18 months! And in contrast to one of his buddies, Jelly Bean, who sent him a lovely card covered with flowers and butterflies she had drawn when she was 3 and he was 4 and didn’t want to draw a straight line.

Any time your child seems developmentally behind where you feel he should be, or behind other children, it’s always worth checking into. Look up developmental newsletters and checklists to check whether your expectations are reasonable. It could be you’re expecting too much, too early. If he’s not meeting the exact questions on a checklist, ask yourself whether he is doing other tasks which show that same developmental capability.

For example, with my son, he was generally right on track developmentally. When it came to writing, I knew that the issue wasn’t that he didn’t understand letters, or the power of the written word. He was an early reader – beginning to read words at age 3, and reading chapter books by age 5. The issue wasn’t small motor skills – he could easily manipulate small lego pieces and small pieces in “experiments” he was working on. He just truly had no internal motivation to draw or write or paint.

From time to time I’d suggest it. I would show him the fully stocked cabinet of art supplies, and he would walk away and do something else. He even took an arts enrichment class, called Creative Development Lab for a full year, and managed to never paint or draw a thing.

So, there we were, on the brink of starting kindergarten and wondering if he’d even be willing to write his name.

Then, overnight, for no external reason, he started drawing. And writing. A lot! And talking about how exciting it was that he had his own “art studio” (the art supply cabinet). And producing drawing after drawing. We went to the meet-the-teacher session at kindergarten and she asked him to draw a picture of himself. My husband and I looked at each other with doubt – what would he do? He happily sat down, drew a stick figure drawing (his first!) and wrote his full name next to it. Now, one week into kindergarten, every day he brings home pictures he’s drawn, coloring pages he’s completed (mostly coloring inside of the lines when he chooses to do so), worksheets where he’s traced every letter carefully and well, and craft projects where he’s easily mimicked the teacher’s sample project.

img_20160919_091843618

Over and over, we wondered whether he’d ever be willing to write or draw. But then, when he was ready, he leaped right into the deep end of non-stop creative work. It reminds me of the validity of the advice… sometimes you just have to wait for a child to be developmentally ready to make that leap in skills.

My duplicate did it!

calvin-and-hobbes-duplicator

Last week, my five year old was playing with friends on the playground. One of the children stomped past me, saying “He’s being mean to me.”

I went to my child and said “X says you’re being mean to him.” My child said “I wasn’t mean. It wasn’t me. It was my duplicate #6.” (He’s been reading Calvin and Hobbes, and loves the part where Calvin build a duplicator and makes duplicates of himself.)

So, was he lying? Should he be punished for lying?

When talking about discipline, it’s essential to understand child development. A five year old is in the midst of the magical thinking stage. If you teach them one day about planting pea seeds and growing peas, then the next day, you may find them hovering over the garden plot, waving a stick ‘magic wand’ over the seeds to make them grow now. Or, you may find them planting their favorite toy in hopes that many more will grow.

Sometimes their magical thinking is terribly cute. A friend of mine was making a toy jet pack for a 4 year old, from recycled 2 liter bottles. As they worked, my friend talked about how cool jet packs are and how fun it would be to fly around the neighborhood. When she finished the jet pack and put it on, the 4 year old stood there with her eyes clenched tight in excitement, saying “I’m ready! How do I make it go?” She truly believed that her jet pack would help her lift off and fly.

Sometimes magical thinking is very frustrating. Your child believes that if they do the special magical thing, then they have the power to shape their reality. Sometimes they believe they have the power to change the rules. My middle child knew that our rule is a maximum of “two sweet credits a day” (a sweet credit is a candy or a cookie or a soda, or whatever.) But she kept coming up with one reason after another why that rule shouldn’t apply to her today. It wasn’t that she was trying to talk me into changing my rule (she knew that wouldn’t happen), it was more that she was saying things like “when it’s a sunny day in February, all mamas give their kids four sweet credits” or “Remember, we read that book where she ate lots and lots of cake at a summer picnic and never got sick. So it’s OK to eat lots of cake in the summer.” In other words, the whim of the weather has declared that today is different from a regular day, so what can you do but adapt your routine?

Just as children use magical thinking for things they wish would happen, they also use it for things they wish wouldn’t happen, or didn’t happen.

When my son told me that duplicate #6 was the one who’d been mean, you might jump to the conclusion that he was lying to avoid punishment. But it’s more complex than that. He was actually feeling bad about being mean to his friend. He was sad that his friend had walked away and didn’t want to play with him any more. My son (like all of us) wants to think of himself as a good person, not someone who does mean things. So, he used his magical thinking to say that someone other than him was really the mean one. He was a nice kid who wanted to play with his friend still.

So, I get from a developmental perspective why he’s doing this. But how do I respond? Honor his thinking, but also reinforce that taking responsibility for your actions is important.

“You and duplicate 6 both want to be good people, don’t you? But for both you and duplicate 6, sometimes you forget and you act mean, is that right? Being mean is not OK for either of you.” I pause to be sure he’s heard the message, then say “I see your friend is feeling very sad right now. Can you go over and apologize for being mean, and see if he wants to play again?”

He did go and apologize and they went back to playing happily.

If he’d come back to me with “I don’t need to apologize because I didn’t do anything. Duplicate #6 did”, then I would have said “Duplicate #6 is still figuring out how to be nice. I know you know how to be nice. Can you show #6 how by showing him how you do a really nice apology to your friend?”

This was a one time incident. I might respond differently if I felt like this was a chronic problem that he was frequently behaving badly and blaming it on his duplicate. If that was the case, I would be stricter about calling him on his lie, while still acknowledging the reason for the magical thinking: “You’re not telling the truth. I know you wish that it was duplicate #6 that did it, or you wish it was anyone other than you who did it. But that isn’t true, is it? You did it and you need to apologize for it.”

Pathways Developmental Screening Tool

pathways

Pathways has a sensory motor checklist for ages birth to 7 years. It’s available at https://pathways.org/wp-content/uploads/2014/09/sensorymotorchecklist_english.pdf

Parents check off how their child is doing in these areas: play and social skills, coordination, daily activities, and self-expression. The instructions state “It is important to look at your child’s overall tendencies and clusters of behavior. One or two concerns should not cause alarm. However, if your child is not frequently and consistently demonstrating more than a few of the listed items in each category, print the list, check your concerns, and discuss them with your healthcare professional.”

While I don’t know if it is validated by the same rigorous testing as the ASQ (Ages and Stages Questionnaire) or PEDS (Parents’ Evaluation of Developmental Status), it does look like a helpful and easy to use tool. And it’s free, and you are encouraged to copy it freely. They also have good information on their site about Sensory Integration and signs that a child has a sensory issue.

I have added it to my list of Resources for Understanding Child Development.

Growth Based Mindset

Carol Dweck, a psychologist at Stanford University, has spent decades studying achievement and success. She has developed the concept of a growth-based mindset, summarized here:

Fixed Mindset Growth-Based Mindset
Belief Intelligence and talent are static. They’re something you’re born with: you have it or you don’t. Intelligence develops with effort. The brain is like a muscle that can be trained.
Goals To look smart in every situation.
To never fail.
To push myself and try new things.
To take on new challenges.
Success Proving I’m smart or talented. Stretching to learn something new.
Evaluation of a new situation Will I succeed at it or will I fail?
Will it make me look good or bad?
Will it allow me to grow?
Attitude to challenges I avoid challenges.
I stick to what I do well.
I embrace challenges.
I persist when things get tough.
Response to setback I’m a failure. (identity)
I give up.
I failed. (action)   I’ll learn from it and move on. I’ll try harder next time
Effort Why bother? It’s pointless. Effort is the key to mastery.
Criticism Ignore criticism or deflect: “It’s not my fault.” Learn from criticism: how can I improve?
Success of others I feel threatened by it.
If they succeed, I fail.
I find lessons and inspiration in other people’s successes.
I feel good When it’s perfect. When I win. When I try hard. When I figure something out.
Results They plateau early. Never reach full potential. They achieve ever-higher levels of success.

Mindsets in the classroom:

Students were given a test. Then some of the children were praised for their intelligence: “that’s a good score. You must be smart.” Some were praised for the process: “that’s a good score. You must have worked hard.” The kids were then asked what they wanted to do next, and they were given the option of something easy where they wouldn’t make mistakes or something challenging where they might make mistakes but would learn something important. Those who were praised for intelligence chose the easy task. Those who were praised for effort chose the hard task they could learn from. Later, they gave everyone a very hard test – the kids praised for intelligence lost confidence and lost their enjoyment of the task and later lied about their scores. The kids who were praised for the effort and the process stayed confident, worked hard at the problems and remained engaged and didn’t lie about their results, because they felt they had done as well as they could on a hard test.

In other research, by Dweck and Blackwell, a group of low achieving students attended a class that taught that intelligence, like a muscle, grows stronger with exercise. As they learned to believe that intelligence was something they could learn, rather than something they could never achieve if they weren’t “born with it”, their motivation increased. They worked harder. When they had difficulty, instead of saying “I’m just not smart enough”, they would say that they needed to work harder or smarter. Their math scores improved, and continued to improve in the following year.

Another example of where these mindsets play out is in the math classroom. 3 out of 10 American describe themselves as “bad at math.” This leads to the belief that “I will never be good at math, so there’s no point in even trying.” Parents and teachers often reinforce this perception. Research shows that while genetics and inherent intelligence can help children initially score well, over time the kids that do best in math are the ones who work hard, have good study habits, and enjoy doing math.

To help your child develop a growth based mindset:

  • think about how you praise them: praise effort, not talent. Praise process not product.
  • pay attention to how you talk about your own abilities… do you say “I’m just no good at…” or do you say “this is hard for me right now, but if I keep trying I think I’ll do it”
  • think about how you respond to their failures and frustrations. Do you let them give up, or encourage them to keep trying? Do you say things like “I know it seems hard now, but I also know that the more you practice, the better you’ll get.”
  • encourage them to tinker: play around at something – try and try again until you get the result you were hoping for

Learn more about growth mindsets at http://www.whatkidscando.org/resources/spec_growthmindset.html and Mind-sets and Equitable Education: http://www.principals.org/Content.aspx?topic=61219

Read more on math at “The Myth of ‘I’m bad at math’” at www.theatlantic.com/education/archive/2013/10/the-myth-of-im-bad-at-math/280914/ and “’I’m not a math person’ is no longer a valid excuse” at www.businessinsider.com/being-good-at-math-is-not-about-natural-ability-2013-11

If you’re in the Seattle area, you can attend a lecture on the Growth Mindset by Tracy Kutchlow on Wednesday, April 29. Learn more here.