Category 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.)

What does it mean to be a spectrum disorder?

It 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 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 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.

 

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Gift Guide: Toys to Build Toddler Brains

photo showing toys like Duplo train, Quadro climber

Parents often ask me for recommendations for “the best toys for toddlers”. It’s a little tricky for me, given that I often advocate for owning fewer toys. But, if you’d like a few special items for a child to unwrap for their birthday, Christmas, or another holiday, here are some thoughts on how to choose the best toys. I’m going to sort them into categories based on ways to build a variety of skills and multiple intelligences. (I also recommend you check out my handout on activities and free items which also help to build their brains.)

Word Play (Linguistic / Verbal Intelligence)

We go to the library a lot! And when my son was a toddler, we went to story-time at the library every week. This means we get to “try out” hundreds of books a year for free! We only buy copies of the very best. Here are my favorites for books that toddlers love, preschool level books about inventors and makers, and books that sing. (For your adult reading enjoyment, here’s my recommendations for recommended parenting books and resources for teaching STEM to kids.)

It’s also helpful to play a lot with letters: I like magnetic letters for the refrigerator (which you can use all over the house) and duplo letters.

I also recommend a Kindle Fire tablet with Kindle FreeTime installed, which includes lots of ABC games and literacy building apps. (Here are thoughts on making screen time work for your family.)

Doing the Numbers (Logical – Mathematical Intelligence)

Everything you have more than one of is a math toy! You can count how many blocks you have, figure out whether you have more trains than balls, and so on. A few helpful specialty math tools are: a set of Duplo numbers, which you can use for counting, number recognition, while mixing them into your building tools, Unifix Cubes, and a great app called Bedtime Math. Every night at bedtime, we read a story problem and solve some math puzzles related to that story.

Putting the Pieces Together (Spatial Intelligence)

I like wooden puzzles for younger children and jigsaw puzzles for older kids. Melissa and Doug is generally a reliable brand. Babies 6 – 18 months like stacking toys and shape sorters. Toddlers love wooden train tracksto assemble and a big collection of wooden trains.

There’s tons of great building toys for older kids (I list many here in my STEM Gift Guide) but my all-time favorite is building toy to give is a basic Duplo set. For a 5 – 6 year old, choose basic Legos.

Moving & Grooving (Bodily – Kinesthetic Intelligence)

I would recommend several balls of varying sizes and textures, a Nerf style baseball bat, a Strider bike, and plenty of time to run and play indoors and out.

Rather than buying a pre-made climber that can never change configurations, I recommend a climber built of Quadro (Quadro is a fabulous combination of building toy and playground equipment! We’ve had ours for 20 years now, in near constant use.)

Playing Well With Others (Interpersonal Intelligence)

Imaginary play and telling stories with characters is one way to build interpersonal intelligence. Choose a few stuffed animals or puppets,  a collection of finger puppets to tell stories with, a toy picnic basket with fake food.

Learning about Myself and How I Feel (Intrapersonal Intelligence)

This category of intelligence isn’t about tangible stuff. It’s more about interaction and emotion coaching, and also making sure your child has time for quiet contemplation and down time.

Song and Dance Routines (Musical Intelligence)music

We have a box of miscellaneous musical instruments he can pull out anytime he wants. A few were purchased for him, but most are just items that have entered our lives over the years, like the plastic Yamaha recorder I had as a child, and the plastic Yamaha recorder I had to buy for my daughter’s class when I couldn’t find my old one… We also have a very old electric piano that’s in his room and he spends part of many “nap times” exploring the piano.

We listen to a lot of music together (one older sibling loves Broadway show tunes, one loves vintage jazz, Abuela loves classical and Spanish music) and sing songs A LOT, and enjoy circle-time songs at BC classes and library story times and hymns at church.

Fun with Flora and Fauna (Naturalistic Intelligence)

As you can guess if you’ve read other posts on my blog, we spend a lot of time outdoors. Camping, hikes, zoo trips, farmer’s markets, walks to the library and the pool. The only “tools” we use outdoors are a bucket and a shovel. (But, when we forget them, a stick and a rock can fill in as digging tools, and an empty Starbucks cup from the car makes a fine bucket.) Some day we’ll find our binoculars again, and pick up a new magnifying glass.

Expanding Horizons (Magic / Imagination / Religion / Cultures)

We have a big box of miscellaneous dress up – old Halloween costumes from his siblings, sunglasses, silly hats, etc. In all of our books and the videos we watch together, we aim for showing lots of diverse cultures and experiences, and we go to a church that talks a lot about diverse beliefs and appreciation of the sacred in all forms.

All the Pretty Colors (Artistic Skills and Appreciation)

This is the one area we have an abundance of STUFF.

One cabinet in the kitchen is over-flowing with art supplies: Model Magic clay, no-spill watercolors, pom poms, pipe cleaners, paint, paper, glitter glue, stickers, markers, crayons, beads, scissors, and so on. When he and I are in a relaxed, mellow mood, we pull these out and get to work.

I try not to do much art when I’m in a cranky mood, or when I won’t have time to deal with any mess that arises. I have to confess that I can have a hard time when he’s being really messy or “wasting” art supplies, or “messing up” art supplies – like when he dips the red-paint-covered paintbrush into the yellow paint. Because I know that about myself, I make sure that he has plenty of opportunity to do art in spaces that are designed for kids’ art and where it’s OK to make a mess. So, this year, he’s enrolled in Creative Development Lab, which is all about exploring and experimenting with art.

Child-Directed Play

In addition to buying stuff for your kid to play with, also make sure they have some time to play with you that is child-directed – where they get to decide what they want to play. Learn more about child-directed play.

If you have an older child, check out my Gift Guide to STEM Toys for Ages 3 – 6.

(Note: this post includes Amazon affiliate links. If you click through and purchase anything, I get a small referral fee. I spend any income from that on doing outreach to encourage more parents and educators to come check out what I offer here on this blog.)

Autism Acceptance Month

AAM-logo

April is Autism Acceptance Month.

Autism Speaks is a major national non-profit which says April is Autism Awareness Month. This is a major fundraising effort for them. They talk about “lighting it up blue” to raise awareness of autism, but you’ll note that their website about the event is focused on raising funds for them. [It’s worth noting how they spend that money: 16% of their budget goes to fundraising, their executive pay is >500K per year (source), 22% of their budget goes to research.] Many autistics voice concerns that Autism Speaks has used ableist, pathology-based descriptions of autism, invoking pity as a fundraising strategy and that their research has a focus on preventing or “curing” autism. (source)

What’s the problem with pushing for a cure to autism?

“Many autistic people don’t actually want a cure

It is true that a lot of autistic people suffer. But what they suffer from is not so much being autistic as living in a society that is not friendly to autistic people.

A society that frowns upon people wearing sunglasses and earplugs indoors despite their sensory differencesA society where someone flapping their hands will be stared at and pitied, or told “quiet hands!” rather than be seen for the joy they’re exhibiting… The people who enforce these beliefs are not only telling autistic people that their very existence is wrong, but they are participating in oppression.

Moreover, the idea of curing autism isn’t as simple as it seems from the outside… Autism is a neurological difference that inherently shapes an autistic person’s identity, perspectives, dreams, and desires. As my sister put it: ‘Whenever you tell an autistic person they should be cured, you’re telling them that they shouldn’t be them.’ ” (Source)

So, instead of “lighting it up blue”, let’s instead talk about this as Autism Acceptance Month. Here’s how the Autism Self-Advocacy Network describes that.

“During Autism Acceptance Month, we focus on sharing positive, respectful, and accurate information about autism and autistic people.

Autism Acceptance Month promotes acceptance and celebration of autistic people as family members, friends, classmates, co-workers, and community members 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.

In a nutshell, Autism Acceptance Month is about treating autistic people with respect, listening to what we have to say about ourselves, and making us welcome in the world.”

Autism acceptance shouldn’t imply that being autistic is easy, or that we celebrate the very real challenges. However, it does imply we should see the strengths of autism as well, and see how simple accommodations could make a huge difference.

“I do not celebrate my inability to consistently feed myself. But I do celebrate my unusual capacity for focusing on small details – a trait which makes me a good musician, a good student, and a good gift-giver. I do not celebrate my self-injurious stims. But I do celebrate my innocuous ones – I like making the pterodactyl screech, even though people stare. I do not celebrate the fact that I can’t make eye contact well enough to succeed in a job interview. But I do celebrate the fact that I can make conversation without needing to stare at someone’s eyeballs. I do not celebrate the fact that I was viciously bullied throughout elementary, middle, and high school. But I do celebrate the fact that I’m infinitely more gentle, compassionate, and interesting than any of my bullies will ever be. I do not celebrate my deficits in auditory processing that make taking notes in class nearly impossible. But I do celebrate that my experiences as a special needs student motivate me to teach special needs kids today the self-advocacy skills that I so sorely lacked when I was their age.

Try, for a minute, to look at autism through the lens of the social model of disability. Consider that, perhaps, it’s not our style of communication and interaction that disables us, but it’s the society in which our way of being is perceived as abhorrent. Perhaps what we need is a more accessible society, one in which autistic people – including those who require high levels of support for daily living – are accepted and accommodated.” (Source)

Learn from Autistics

A common slogan of autistic advocates is “Nothing About Us Without Us“. Often autism awareness activities are designed by people who are not autistic. They may staff panels with professionals in the field or parents of autistic people, but not include a single autistic person. “While it has become standard practice to have conversations about autism and Autistic people without Autistic people, this is a practice that must change.” (From Lydia X. Z. Brown) (Also learn more about including autistic people in research into the experiences of autistics.)

For this post, I tried to primarily read the voices of #ActuallyAutistic authors. I will quote  from autistic authors, because it is important that their voices be heard as speaking their own experience. (Check out the #actuallyautistic hashtag on Twitter, this list of Actually Autistic Blogs, GoodReads’ list of Books by Actually Autistic Authors)

Identity-First Language

I refer to autistics or autistic people, not people with autism. I say someone is autistic, rather than has autism. This is because many autistic advocates request this “identity-first language” vs. “person first language.”

“Person first language is often used to describe something negative — a deficit or disease (for example, person with cancer).
For Autistic people, autism is seen as just like any other identity marker—similar to gender, race, ethnicity, hair color, or any number of other value-neutral characteristics. We are not “people with tallness,” “people with maleness,” “people with Jewishness,” “people with gayness,” or “people with autism.”
We are Autistic people.”  – Autistic Self-Advocacy Network

“The theory behind person-first language is that it puts the person before the disability or the condition, and emphasizes the value and worth of the individual by recognizing them as a person instead of a condition. But let’s think about what we are doing… When we say ‘person with autism’, we say that it is unfortunate… we affirm that the person has value … [and that] autism is detrimental to that value…

When we say ‘Autistic person’, we recognize, affirm and validate… the value and worth of that individual as as Autistic person.” – Lydia X. Z. Brown

I speak of neurodiversity when speaking of the benefits that autistic perspectives can bring to a conversation. Neurodiverse can also be used to incorporate people with other differences in learning styles, such as ADHD.

I may refer to people without autism as neurotypical or as allistic. Allistic is a new word to me, but it was coined by Zefram in 2003, who says:

Allism is the condition of not being autistic. They are alternative brain structures, both valid, with a continuum of intermediate possibilities, just like heterosexuality and homosexuality… [there are] no connotations of normality or abnormality; they should be treated as descriptive terms on a par with “male” and “female”.

The advantage to allistic is that it’s completely value neutral. Neurotypical could be seen as meaning “normal” which would mean that neurodiverse people are “abnormal.” It is “othering” language. But I know autistics who take pride in being neurodiverse vs. “those [boring] neurotypicals”, so for now, I’ll continue using that term as well as allistic.

The Spectrum

Autism is short for the official diagnosis: autism spectrum disorder. (Note: “many autistic people feel that the term “disorder” unnecessarily pathologizes our neurology” – source)

People often ask about an autistic person “where on the spectrum are they?” as if some sort of quantitative ranking would sum up what they need to know. In trying to describe an individual’s capabilities or challenges, in the past, you may have heard them labelled as high-functioning and low-functioning. “Be aware that many autistic people may be uncomfortable with functioning labels … The short reason is that [they are] often used to deny those deemed high-functioning from necessary services and accommodations and used to strip those deemed low-functioning of their rights.” (Source)

This comic by Rebecca Burgess offers a helpful perspective on the spectrum. She says people often think the spectrum looks like this:

a line showing a spectrum from not autistic to very autistic

But Burgess describes how this doesn’t really describe the actual experience of autism. And it can also lead to misunderstandings of a person’s skills and accommodation needs. If someone is verbal and able to conform to most of the demands of a school or work setting, they get labeled as “not that autistic”, but then if they have too many demands thrown at them and have a meltdown, then suddenly they decide you’re on the high end of the spectrum and must not be capable of anything at all.

She thinks this would be a better way to illustrate a spectrum for a particular individual.

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

This spectrum illustration better shows where that person’s strengths lie and what things might be more challenging for them.

Someone who is skilled in most of these areas, but has some challenges may be able to “pass” as neurotypical – able to blend successfully into a school or academic setting – though they may be perceived as “odd ducks.” In the past, they may have been called high-functioning, or diagnosed with Asperger’s Syndrome. Some people have limited skills in most of these areas, and have very high support needs, such as needing help with toileting  or engaging in self-harming behaviors. They were once described as low-functioning. And some people have very low skills in some areas and VERY high skills in others. They were called savants or “rain man”. They are all autistic people. With different spectrum plots, and different support needs.

When we talk about autism acceptance, we can’t just focus on one “end” of the spectrum and ignore the challenges faced by people on the other “end” of the spectrum and by their caregivers. It is essential that all people with autism and their caregivers get the supports they need based on their own individual situations.

But all autistic people, regardless of their “level of functioning” will benefit from respectful treatment which sees their strengths rather than pathologizing them as inherently flawed due to an autism diagnosis.

Co-Morbidities

Read this passage from an allistic mother of an autistic son:

I have a real beef with the notion of celebrating autism when 22% of children with autism develop epilepsy and 70% experience gastrointestinal problems. In a recent study in the Lancet, two-thirds of adults with Asperger Syndrome, now part of the autism spectrum, reported considering suicide. 35% had made specific plans or an attempt. Another study showed children with autism were three times more likely than their typically developing siblings to be bullied. Children with developmental disabilities have a substantially increased risk of becoming victims of sexual abuse.

The issues she is describing here are co-morbidities and social issues, not autism itself.

Co-morbidities are physical and mental illnesses that are much more common in autistic people than they are in the general population. Yes, these include epilepsy, gastrointestinal problems, ADHD, anxiety, bipolar disorder, schizophrenia. These are all illnesses that need medical attention, and having both autism and one of these conditions can make it more challenging to treat these, but these illnesses are not autism.

The fact that people with autism are more likely to be abused, more likely to be bullied, less likely to be successful in school, less likely and (perhaps as a direct result of these challenges) more likely to be suicidal are social issues. They are not due to autism, but to societal attitudes about autism.

“While it’s certainly not fun to be hated, discriminated against, and abused, as too many autistic kids and adults are, I hardly think it’s fair to blame autistics’ neurology for the ableism, ignorance, and lack of compassion showed by the neurotypicals who surround them.

…Autism doesn’t cause suicidal thoughts. Mass abuse of autistic people, on the other hand, just might. That’s why, instead of fearmongering about autism, instead of amplifying the already loud voices out there that talk about how hard it is to be autistic, and how hard it is to have an autistic child, I choose to advocate for a world in which we treat autistic people better, in which accessibility and acceptance, not compliance training and abusive ‘cures’, are the priority.” (source)

“Cures” vs. Acceptance and Accommodations

In my writing, I will not describe the increased prevalence of autism diagnoses as an “epidemic” or a “crisis”. I will not talk about “curing” autism or about a “person afflicted with autism” or “person suffering from autism.”

I will not talk about vaccines causing autism. They don’t. But, even if they did, I worry about the societal messages that lead parents to choose not to vaccinate because of their terror of having a child with autism. As one autistic, Sarah Kurchak, put it:

Someone who refuses to vaccinate their children because they’re afraid of autism has made the decision that people like me are the worst possible thing that can happen to their family, and they’re putting everyone at risk because of it.

It’s time to accept that autism is a common variation on the human experience. By current definitions, 1 in 63 people are autistic. It’s time to start thinking about how we accept this and how we help create accommodations that support autistic people with meeting their own goals.

Some autistic people may choose therapies that help them learn to look and act more like an allistic person. But not all will choose that.

“Many autism interventions focus on making autistic people look more like non-autistic people. Common therapy goals include increasing eye contact and reducing unusual movements. These aren’t priorities typically selected by autistic people ourselves. More common priorities include reducing the impact of some of the downsides associated with autism, such as anxiety and sensory hypersensitivity; learning skills needed to succeed in education and find employment; and accessing supports and accommodations to assist with daily living. There may be intolerable costs associated with a focus on achieving an appearance of normality. Eye contact may feel painfully intense and intrusive, or it may be impossible to simultaneously make eye contact with someone and understand their spoken words. Staying still may require a vast amount of attention, leaving little left for learning. Hand-flapping may be an expression of joy, or a way to regain a sense of where one’s body is in space. Those of us who have either made ourselves look more normal or achieved some of our goals are often told we have “overcome” autism. This is misleading. We have often had to confront and overcome prejudices, or put much more work into learning a skill that comes more easily to others.” (source)

So, can we relax a little bit about whether or not someone makes eye contact when they talk? Can we not worry about whether someone feels more comfortable wearing headphones in loud environments? Can we chill a little about stimming behaviors such as rocking and hand-flapping? Can we understand that “restricted interests” isn’t evil in and of itself? (Read “The Obsessive Joy of Autism” for insights into the experience of autism.)

Now, I’m not saying it’s not helpful for autistic kids to learn how to use neurotypical social skills. This will make their lives easier as it will help them to fit in better to school and work environments that are primarily geared for neurotypical people. But we describe it that way… we don’t describe it as teaching them how to be normal so they’re not such a problem at school and work.

And all the work shouldn’t be on autistic people. Allistic people should also think about meeting them halfway. What are things we can do to make those school and work environments more flexible and more accommodating for all people, both allistic and autistic?

Symbols

A puzzle piece is often used as a symbol for autism.

Back in 1963, the National Autistic Society chose a puzzle piece as a logo because autism was “puzzling.” Many people (often allistic people) still think this symbol makes sense, because autism is often puzzling to them. Some autistic people think it’s fine because neurotypical people puzzle them. Some (often allistic parents of autistic children) feel the puzzle piece is a good symbol because finding all the right supports and accommodations to help an autistic thrive is like putting together a puzzle.

But the full logo in 1963 was a puzzle piece with a crying child on it. That implied that only children have autism, and that it is a condition that they will suffer from. A lone puzzle piece can also seem isolated.

Some autistics are also troubled by the puzzle piece symbol because “The jigsaw piece also signifies that something is missing. That autistic people are not whole.” (source) “It implied that we are something to be solved or fixed… We don’t need to be fixed, or solved  there’s nothing wrong with us, and most attempts to fix us… are actively harmful.” (source)

“Some autistics dislike the symbol of a colorful puzzle piece because it appears childish. The bright primary colors and image of a “toy” most commonly associate with children identify autism as a childhood disorder.” (Source)

Here are some alternatives:

In 1999, the Autism Society adopted the puzzle piece ribbon for autism awareness.

It’s definitely an improvement – it includes many colors of puzzle pieces, interconnected with others.


logo for autistic self-advocacy networkThe Autism Self-Advocacy Network has chosen a spiraling rainbow heptagon as their symbol.

Their symbol for autism acceptance month seen at the top of this post is a seven pointed star woven from all the colors of the rainbow.


Many autism rights advocates recommend the rainbow infinity symbol, which can also be used to represent neurodiversity, to include all the colors on the spectrum. This has been called the “autistic pride” symbol.a rainbow infinity sign, used to symbolize neurodiversity

(Read more thoughts on symbols from autistic writers:  Autistic and Unapologetic, Learn from Autistics, OllibeanAutistic Alex, and Art of Autism – which is written by an allistic person, but quotes autistics)

Blue or Red?

Autism Speaks’ logo is a blue puzzle piece, and they encourage people to “light it up blue”.

“It’s a nice symbol of solidarity, really, it is, but here’s the thing: it’s blue because they operate on the outdated assumption that it’s mostly boys who are autistic. On the one hand, let’s overlook the old science, and the gender stereotype of “blue is for boys,” because the large majority of people and organizations lighting it up blue are simply trying to be supportive of the autism community.” (source)

Many autistics advocate for #redinstead in April.

Learning More about Autism Acceptance

  • ASAN has a website for Autism Acceptance Month with great resources for autistic people, parents, educators, employers, and allies.
  • Thinking Person’s Guide to Autism has a great page which includes: criteria for evaluating whether autism articles and efforts benefit, rather than harm, autistic people, where to look for good information, where to donate money if you want to support autistic people, recommended books to buy or give, and how to help boost autism acceptance materials.
  • This Wikihow article on How to Observe Autism Acceptance in April includes ideas like: research an organization before participating in their events, notice the way that organization talks about autistic people, share articles written by autistic people, share information about respecting autistic people, donate to autistic run organizations (here’s how to evaluate campaigns), and support autistic run businesses.
  • Disability in Kid Lit publishes articles / reviews on the portrayal of disability in middle grade and young adult books. They have recommendations for books featuring autism.
  • I’ve collected a huge list of Children’s Picture Books about Autism with reviews of lots of books for kids age 3 – 8, and lists additional books for kids age 9 – 12.

 

Do the ASQ Screening for Your Child

stick

Why do a developmental screening?

Developmental screenings are a helpful tool for making sure your child is on track with their development. They are a “snapshot” of how your child is doing at this moment. They’re helpful even if you’re pretty sure your child is on track, because they help you get ideas of where to focus your attention in the short-term to make sure they’re well rounded. They’re especially helpful if you have any concerns about your child’s development – a screening tool can either reassure you that they actually are on track, or can verify that they have some challenges that you should seek support for early on.

Developmental delays, learning disorders, and behavioral and social-emotional problems are estimated to affect 1 in every 6 children. Only 20% to 30% of these children are identified as needing help before school begins.(Source)

The ASQ

There are several great screening tools and resources for understanding child development. Today, I’ll walk you through the ASQ – the Ages & Stages Questionnaire, a free online tool, using a method that’s been proven through research with tens of thousands of parents. (Learn more about the ASQ.)

It looks at how your child is doing in five areas: communication, large motor, fine motor, social-emotional, and problem-solving. Learn more about these developmental milestones.

Doing the questionnaire likely takes 15 – 20 minutes. It’s easier to do on a laptop or desktop than on a mobile device. It’s best to do it when your child is around so you can check their skills if there is any answer you’re not sure about. And it’s best if they’re rested, fed, and relaxed so they can show you their best skills. That said, it can also be helpful if another adult is around to help you with distracting the child while you’re filling out questions and can help you figure out answers to questions you’re not sure about.

Note: Some parents choose to download the questionnaire and print it to fill in off and on over the next week, then return to the website to enter their results online so that it will do the scoring for them.

Completing the Online ASQ

Go to https://osp.uoregon.edu/home/checkDevelopment. Click on “Let’s Get Started”

On next page click continue – on next page click to agree to terms and continue, then enter date of birth. Then you’ll get a screen saying something like “For ages 25 months through 28 months – 27 month ASQ” – this is making sure you’re using the right checklist for your child’s current age.

Continue to online questionnaire. (Or download it to fill out by hand and then return to the website later.)

There will be a page where they ask about demographics – ethnicity, education and so on – they ask this because the people who are offering this survey are doing research on who uses the tool, and this is helpful to their research process. They do not do anything with this data which would violate your privacy, and you won’t get any emails from them except the results of this screening.

The next screen will be instructions – they’ll tell you that you need to try every activity with your child before marking an answer – that would be ideal, but you don’t have to… if you know your child can do something easily, it’s OK to just mark it yes. On things you’re not sure about, do have your child try it.

On the questionnaire, you’ll be asked 30 questions – 6 questions per category in 5 areas of child development. You’ll mark “yes” if this is something your child is definitely capable of and has done successfully multiple times. If they have done it a few times or they can sometimes do it but not always, mark “sometimes”. If they’ve never done it, mark “not yet”. The way the survey is designed, we might expect a not yet or a couple sometimes in any given category, so don’t worry if you’re seeing some.

Mark answers as accurately as you can – this screening is not about “making your child look good” – it’s about getting an accurate assessment of where they’re at.

Then there will be a few general questions, like does your child hear well, do they have vision problems. It’s OK to fill those out or to skip them.

Then it will say something like: “For ages 21 through 26 months (24 month ASQ:SE). The ASQ:SE-2 asks simple questions about your child’s behaviors. Before continuing, please read instructions…”

This second questionnaire, the ASQ-SE, is optional. I would say: if you feel like your child has more behavioral challenges than the average child, or more big meltdowns / tantrums, or doesn’t connect to you and others like you see other children do, or there are other things that make you worry that your child may not respond like other kids do, then do this questionnaire. If not, you can choose to skip it. This questionnaire takes 5 – 10 minutes.

Enter your email address to receive results by email. (If you’d prefer not to give your email, then click to skip this step, and it will take you on to a page where you can “download your ASQ Results letter”)

Understanding Your ASQ Results

Your results will look something like this:

Results for your child BXD born on November 23, 2016
Your child’s development appears to be on schedule at this time.
On schedule Communication, Gross Motor, Fine Motor, Problem Solving, Personal-Social
Monitor None
Not on schedule None

or

Results for your child BXD born on November 23, 2016.
ASQSE Social-emotional development is in a monitor area at this time.
Overall Section You noted a concern in this section. See below for follow-up ideas.

Note: if you had a paper version of the questionnaire, results look like this:

tally

The white zone is “on schedule”, the gray zone is “monitor” and the black zone is “not on schedule.”

If your child shows as being “on schedule” that’s good news. This test rarely has any “false positives.” If a developmental screening shows that a child is on track developmentally, we can be pretty reassured that all is well. You can just keep doing what you’re doing with them. Or, if there’s one developmental area where you had more “sometimes” or “not yets” then you may choose to do more activities in that area to ensure they stay well-rounded. For example, if you didn’t mark “yes” on all the large motor questions, then spend a little more time at the playground, pool, or gymnastics or dance classes so they can run, jump, kick, throw…

If your child has some things marked as “monitor” – I think of those as “grey areas”. This test can have “false negatives” where the test shows a possible problem, and it turns out that all is well.

If I see “monitor” in one area, that makes me go “hmmmm…. I wonder why.” Here are the questions I ask myself

  • Can they do similar things? The first thing I do is look back at the questions in that section and how you answered them. (The questionnaire with your answers marked will be attached to your email, or you can find it by clicking on “download your completed ASQ”.) Sometimes there were just super specific questions, for example, there’s a fine motor question of “does your child flip switches on and off” or “can your child string beads on a string” and you said no just because they happen to have not ever done this… but think, are you confident that they have enough fine motor skills that they could do something like that? If so, then there’s no reason to worry about it.
  • Is there something about that question that doesn’t apply to their experience? All standardized questionnaires have some biases or assumptions. For example, there are questions about climbing stairs, and there are children who grow up in a town with no stairs. There are questions about forks and some families tend to only eat finger foods or they use chopsticks so may not use forks at home. When the mother of one of my students was doing this questionnaire, and she showed her daughter the incomplete stick figure drawing in the illustration at the top of this post, her daughter said it showed a teacher. This may not make sense to you, but if you’d met me, it would make sense! (I have one leg and this child knew me well as her first teacher.) If the question doesn’t directly apply to your child, again ask yourself “do they know similar things?”
  • Is there a reason they might be behind in this particular area of development at this particular time? For example, if you are a bilingual or trilingual household, your child might test as “behind” in language in ONE of those languages. But if you think they have solid language skills in BOTH languages, I wouldn’t worry. If you tend to solve problems for your child whenever they get frustrated, they might be “behind” in a problem solving skill, like getting themselves dressed. Or sometimes kids are behind in large motor skills in the winter time just because we haven’t been playing outside where there’s room to run.
  • Is there a reason why they might be behind overall right now? If you’ve had any big stressors in your family recently like a move, a new baby, a death in the family, a divorce – these are all things that might have distracted your child’s learning temporarily.

If you find answers to these questions that satisfy you, it’s likely that all is well and there’s no reason to worry. It wouldn’t hurt to put some extra effort into building your child’s skills over the next two months, and then do another screening just to be sure.

If you’ve taken all of these questions into consideration, and your child still seems to be missing some skills, then definitely work on building those skills (see below) and do another screening in a few months, or seek more information now.

If your child is marked as “not on schedule” in one or more areas, you definitely want to explore it more. Ask yourself the questions above to get a clear understanding of the results, then consult with your child’s doctor, teacher, or another professional to learn more. It is possible that when you investigate more, it will turn out all is well, or there is only a very temporary delay. But it’s important to check to be sure, because if a child does have any developmental challenges, the sooner they get extra support, the better.

Resources if you’re concerned about your child’s development:

Resources to build all kids’ skills

Whether your child is on schedule, not on schedule, or in that gray area of “monitor” they will benefit from diverse learning experiences. I have lots of articles on Play and Fun Activities on this blog. Or check out:

 

Note: Easter Seals also offers the ASQ online for free: www.easterseals.com/mtffc/asq/. Theirs works just fine as an alternate, I just prefer the uoregon site listed above because Easter Seals asks for more of your private information (name, address, phone number) and will add you to their mailings.