Tag Archives: autism

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.

 

Children’s Books about Autism

cover images for 9 of the books described in the text

As a parent of autistic children, and as a parent educator and children’s teacher, I wanted to find picture books for young children that could:

  • offer insights to neurotypical children to help them to understand the autistic perspective better and how to interact with autistic peers in a supportive way
  • give autistic children the chance to see their experience reflected in a book
  • give adults more insight into the experiences of autistic children (I am a firm believer in the fact that sometimes when an adult is reading a book to their child or hearing a book read at a story-time or in a children’s sermon, they can have a-ha moments… somehow the simple evocative words of a children’s story can give us clearer insights that get past our previous assumptions or biases.)

It is important to me that the books talk about strengths of autistic people and the unique contributions that neurodiverse people can make if their needs are accommodated, not just about their challenges or the ‘inconvenience’ of accommodations. It is also important that the books accept that autism is a fundamental part of who the person is, not a disease that can be cured if someone can just learn not to “act autistic”. (Read my post on Autism Acceptance Month, or materials from the Autistic Self-Advocacy Network.)

It is hard for me recommend a single “best book”, because they may serve different purposes. Some may be good for an autistic child, some may be better for neurotypical siblings or classmates. Also, autism presents in a very wide variety of ways, so you can’t read just one book and get whole story of autism. I’ll list the books in alphabetical order below, with my review, to aid you in finding the right books for your needs.

A Friend Like Simon by Gaynor.* Ages 4 – 8. Reviewer Macy McArthur says “…great at showing a neurotypical child’s process of being introduced to someone with autism for the first time, being honest about not understanding his differences/hesitant to befriend him, then to growing comfortable and realizing his autism is just a normal part of Simon [and] easily accepting Simon…” Note: The children exclude a girl, Hettie, for being mean to Simon – some reviewers recommend just skipping this last page, so as to not endorse excluding anyone.

A Manual for Marco: Living, Learning, and Laughing With an Autistic Sibling by Abdullah, illus by Tejpar and Abdullah.* Ages 6 – 9. The story is told from the perspective of an 8 year old girl with an older, autistic brother. She makes a list of all the things she likes and does not like about her brother’s autism and when she’s done, she realizes she has written a “manual” for understanding her brother. Endnotes with additional tips. Engaging way of giving a factual overview about autism and how to interact with an autistic child.

All My Stripes: A Story for Children with Autism by Rudolph & Royer, illus Zivoin. 4 – 8 years. The main character is a zebra with autism, who comes home from school distressed by how the other children view him, and his challenges with interacting with them. “They were talking about a video game I play all the time, but I didn’t know how to start talking to them. I started talking about all the things I knew about the game, but since I was staring at the floor, nobody knew I was talking to them… I started talking louder… How come all anyone sees is my autism stripe?!” His mother tells him she sees many stripes (his pilot stripe, his caring stripe, his honesty stripe and his curiosity stripe). He feels better, saying “[My autism stripe is] just part of me… I love each stripe, because without them, I wouldn’t be me.” Nice book for autistic children or NT, about the strengths and challenges of autism. Great illustrations! Includes a lengthy reading guide for adults where they walk through each of the ideas presented in the book and talk about it in detail to further explain how they reflect the experience of an autistic child. Also includes a lengthy note to parents and caregivers about signs of autism, information about evaluation, treatments, and advocacy for support at school.

Andy and His Yellow Frisbee by Thompson.* Ages 5 – 8. Tells a story of Andy who is non-verbal and spends his recess time spinning a yellow Frisbee round and round. A girl who is new to school notices him. Andy’s sister is protective of him, but clearly accepts and cares for him. Several reviewers praised this book as an effective way of demonstrating acceptance of autism and finding commonalities between Andy’s frisbee and the neurotypical child’s decision to bring a teddy bear to school with her as a comfort item. One reviewer found it stereotypical and another felt Andy was treated as a “novelty act.”

Autism Is…?  by Wideman… Ages 4 – 8.* Written by a grandmother of an autistic person. Aimed at autistic children rather than at neurotypical siblings and classmates. Describes a wide array of symptoms rather than stereotyping to a few. Review ahuser says “clear, easy to understand, somewhat positive light but also touches on explaining some struggles that come along with autism. It does not use figurative language like some of the other books do, which is very helpful because my daughter, and many others who are on the spectrum, take words literally.”

Ethan’s Story: My Life With Autism by Rice.* Ethan Rice was diagnosed with autism at age 4. He wrote this book at age 7 to help kids understand his challenges and strengths in his own words. Good as an introduction to one child’s experience of autism. It would be a good supplement to other books that give a broader view.

The Girl Who Thought in Pictures: The Story of Dr. Temple Grandin by Mosca, illus Rieley.* 4 – 8 years. Sample text: “Unique from the start, an unusual girl. She loved spinning in circles and watching things twirl. But some things she hated, like certain loud sounds, or bright crowded places, large cities and towns.” The rhyming couplets and simple language makes this accessible for young kids. There’s supplementary material at the back, telling more about Temple’s life and accomplishments. A positive description of autism. Also a good example of how to write engaging biographies for young children.

Hello Roar, Little Dinosaur by Reeves, illus Morris.* Written by a mom of an autistic person. Described as celebrating the fantastic characteristics and qualities found in kids with autism. There is more info about this series on their website: http://www.roar-littledinosaur.com/index.html

I Love Being My Own Autistic Self by Landon Bryce. Age 6 to adults. A comic written by an autistic self-advocate with an MS in education. This book offers great insights. Vector, the narrator, says “There are good things about my autism. I have interesting and unusual ideas… I’m very observant… I am able to focus very intensely… sometimes it makes people uncomfortable when I talk about the good parts of my autism… they might think I’m saying I don’t think autistic people need support or treatment, but I think those can be good things… Even though I’m proud of being autistic, autism is very hard for me and I know it can be even harder for other people… it’s hard for me to communicate… I’m scared a lot of the time… I find unexpected changes very upsetting.” We also meet his friends, one of whom has Asperger’s, one is non-verbal autistic, so there are a variety of depictions of the autism experience. We meet his friend Pang, who says things like “if you just tried a little harder, you would seem perfectly normal”, his sister who thinks the best way to help autistic people is to help them be like neurotypical people, and Dr. Chip who wants to prevent or cure autism. Vector says “I think we can help people like my friend Marko by … paying attention to the things they say without using words… I think we need to accept everyone for who they are in order to really help them. I want Marko’s life to be easier but I want it to be his life.”

I See Things Differently: A First Look at Autism by Thomas. 4 – 7 years. Written for NT children to introduce autism and the ways that autistic children may behave because their brains work differently. It’s an OK book – if it’s the choice that’s available in your library – I think it does an OK job of explaining autism in a way that, on the surface, is sensitive and caring. But if I were choosing a book to buy, it wouldn’t be this one, because it has a bit of an us vs. them feel to it… here’s what we can learn about those people. The author also seems to have a subtle bias that people with autism are often unhappy. This shows in the illustrations and the words: “do you know what it feels like to be worried or nervous or scared… people who have autism feel these things a lot… people with autism may find big crowds or loud noises very frightening… they may move their bodies in ways that look strange to you… being with more than one person at a time may be upsetting… With love and support… people with autism can learn to feel a little happier and safer each day.” A few illustrations do show happy children playing with a car or lining up pencils or flapping while working on a puzzle or sitting in just the right chair, but none of the words talk about happiness in autistic children. (Check out The Obsessive Joy of Autism for insight on the upsides to autism.)

Ian’s Walk: A Story about Autism by Lears, illus Ritz. Age 5 – 8. Julie wants to go to the park with her big sister, but her little brother wants to come along. Ian is autistic, and on the walk, she notices how different he is – he doesn’t like smelling the things she likes to smell, the noises that bother her don’t bother him but he seems to hear things she can’t, he wants to lay on the ground instead of throwing cereal to the ducks with her. Then Ian gets lost and Julie knows how to find him because she knows what he likes best. On the way home they walk the way Ian likes to walk and Julie doesn’t try to change him, she just waits patiently. Sweet, conveys all the ambivalent emotions siblings may feel, including loyalty and love, so a good choice for siblings to see some of their own experiences reflected. (Reviewers on Amazon felt that Ian was one particular view of autism, and noted that autism presents in lots of different ways.)

Leah’s Voice by Demonia, illus Turchan. 6 – 8 years. (Inspired by two real-life sisters.) Logan is excited to have her friend Abby over for a playdate, but Abby doesn’t understand why Logan’s older sister Leah doesn’t say hi till Logan reminds her to, and why Leah gets up and walks away in the middle of a game. Abby tells Logan that she doesn’t like being around Leah. The family tries to go to a movie, but Leah starts screaming and runs away. The parents sit Logan down because they’ve decided that Logan is old enough now to tell her that Leah is autistic. (Side-note: personally, this is something that I would have been speaking to my child about all along, not saving up for “the Talk”.) They describe it as “a disorder that makes it hard for Leah to talk to us and sometimes things upset her that wouldn’t upset you or me.” They say “it’s not something that will go away, but we see Leah handle things better all the time. And we can try to see the world a little like Leah does.” The book ends with a focus on how Leah is good at creating art. I think the best audience for this book would be a child in Abby’s situation – where one of the child’s friends has a sibling with autism, and the book could help give the “Abby” some empathy and insight into “Leah and Logan’s” life.

Looking after Louis by Ely, illus Dunbar. 6 – 9 years. Tells about Louis, a new boy at school. A few children try to connect with him – he tends to echo words and not connect in the way they expect. But then one day a boy named Sam engages Louis in a soccer game – if his foot touched the ball, he shouts “Great Game Louis”. Louis draws a picture of the game. Louis, a boy, and Louis’ aide go out to play more soccer. Although the book doesn’t call Louis autistic or educate about general tendencies of autistic children, it is a specific story that illustrates how an autistic child would be integrated into a mainstream classroom where they would be asked to participate in some activities to the best of their ability but also exceptions to the rules would be made to accommodate their challenges.

Lucy’s Amazing Friend: A Story of Autism and Friendship by Workman, illus Raynes.* Age 6 – 9. A girl named Lucy sees Daniel, who is autistic, non-verbal and has an aide at school. She befriends him. The teacher describes Daniel in somewhat deficit terms “People with autism sometimes have a hard time speaking and understanding things that come easy to us.” In the sample pages, the other children shun Daniel and think he’s weird. The description says that Lucy tries to change their minds, but I don’t know if she is successful at that or if she remains his only friend.

Maybe Autism Is My Superpower by Ben Blanchet, illus by Lily Blanchet.* “After seeing a superhero movie, Ben Blanchet, a thirteen-year-old boy who has autism, decided that maybe autism is his superpower. This book details a fascinating conversation between a mom and her son who has autism. Ben describes the unique ways he hears, sees, and thinks about the world around him.” There’s not an age guideline or a sample text, so I don’t know what age it is aimed at. Reviewers find it a positive approach to seeing the unique strengths of ASD through the eyes of an autistic person.

My Brother Charlie by Peete & Peete, illus Evans. Age 5 – 9. (Written by a mom and sister to an autistic boy.) Callie and Charlie are twins. Charlie is autistic. This book is written by a mother and a sister of an autistic person, and it shares a sweet and compassionate story that I think will appear to siblings of autistic children. Although she talks about the challenges – “it’s harder for Charlie to make friends. Or show his feelings. Or stay safe.. And there are days it’s hard to be Charlie’s sister – he can ruin the best playdates.” She also talks about all of Charlie’s special strengths – “he knows the name of all the presidents! He’s a fish in the water. He has a special way with animals.” And about the way they connect to each other – “he laughs when we lock fingers in a holding-hands game. That’s Charlie’s I love you.”

My Brother Daniel by Berger, illus Deveau. By a parent of an autistic child. Tells about a little boy coming to terms with his brother’s autism – Daniel flaps, spins, and shouts, and the brother wants people to also notice his strengths.

My Brother is Autistic by Mallinos, illus by Fabrega. Available in English or Spanish. 6 – 9 years. A story of a boy whose brother Billy is autistic. In the lunchroom, another boy steals a cookie from Billy. Billy has a big meltdown that embarrasses his brother who runs from the room. The teacher tells the class about people with autism who were successful or famous, then explained the challenges of being autistic. As Billy and his brother walk home, they play together. This is not a book I would use to introduce autism to NT or autistic kids because it’s more focused on deficits and not on what kinds of support would help autistic kids become successful adults. I might use it with a sibling who was coping with embarrassment at school if I thought it would be helpful for them to have a story to relate to.

My Friend Has Autism by Tourville, illus Sorra. 5 – 8 years. At first glance, this is a sweet story about a neurotypical kid who is friends with an autistic boy named Zack, with whom he shares a huge interest in model airplanes. Our narrator is patient with Zack’s different needs: “When I go to Zack’s house, I bring my own models. It bothers Zack when other people touch or play with his models. Each plane has to be in just the right place.” However, there are problematic issues with this book. Amazon reviewer supremeox says “[on] the third page [was] an offensive and unacceptable message… ‘Did you know? Autism is a brain-based disorder. With autism, parts of the brain don’t grow the way they should. No one knows why some kids have autism. There is no cure.’ … Right away the message is that the autistic person is defective…. it promotes the idea that autism is a disease. Autism is not a disease, it is an alternate brain development.”  Amazon reviewer Christina N, who is autistic, says “The basic message is to like this kid, ALTHOUGH his brain doesn’t work right. There is nothing wrong with autism. Sometimes it’s hard to be autistic. But I want my fiends to like me BECAUSE I am different and because of my personality in general, not ALTHOUGH I am different. ”

My Friend with Autism by Bishop and Bishop.* Age 4 – 8.  Written by a mother of an autistic person. Book description: “Written for classmates of spectrum students and the classmates’ parents… explains in positive ways that children with autism are good at some things, not so good at others – just like everyone else! ‘Notes for Adults’ offer parents more detailed information.” Amazon review by Scotty’s mom says “The book is primarily a picture book, in black and white drawings that can be used as a coloring book. The text is very well written, with particularly good points about ASD kids: lack of understanding of social cues and emotions, hypersensitivity to sound and light, poor ability in talking, and the need and desire for friendship nonetheless. I highly recommend this book for elementary grade teachers to read to and with the class. …The only drawback with this book, in my opinion, is that the ASD child is constantly featured with a smile on his face, and sometimes with good eye contact and body position. As you all know, it is a rare ASD child who smiles that often and who makes good eye contact.”

Nathan’s Autism Spectrum Superpowers by Yarborough, illus. Merheb.* 6 – 10 year olds. Description says “The superhero of this book, Nathan, explains about his Autism Spectrum Superpowers… Each “superpower” includes a Helpful Hints for Friends section that gives ideas on how to help a child with autism in different situations. Nathan’s superpowers include his Supersonic Hearing, a Super Sniffer, Regular Routine Retention, Actual Factual Literal Powers, and many more. This book also contains a Reaction Regulator scale to help your child regulate emotions and a place where they can list their own Energy Drainers and Energy Builders.” Originally written by a mother for her son. A few reviewers voice concerns about “big words” and think the book would not appeal to kids. But, I know several autistic kids that like big words and would find this book engaging as it describes their experience of the world.

Noah Chases the Wind by Worthington, illus Cowman. Ages 3 – 7.  Noah is a child with sensory integration disorder (and maybe autism?). The book description says “He sees, hears, feels, and thinks in ways that other people don’t always understand, and he asks a lot of questions… His books usually provide him with the answers he needs, until one day, there’s one question they don’t answer—and that is where Noah’s windy adventure begins.” The wind picks him up and flies him high above the clouds. It’s a lyrical fantasy story, featuring a neuro-diverse main character, though it doesn’t directly address autism as the other books on this list do. Kirkus review says “An invitation to wonder, imagine and look at everything (humans included) in a new way. ”

Since We’re Friends: An Autism Picture Book by Shally, illus Harrington. 4 to 8 years. “Sometimes Matt doesn’t understand what the coach is saying. It’s hard for him to listen when the gym is really loud. Since we’re friends I show Matt what to do… when the pool is suddenly closed for repairs, Matt is furious. He doesn’t like it when our plans suddenly change… Since we’re friends, I think of a new plan…” I really like that it shows how Matt’s friend does simple things to accommodate Matt without trying to change him or make him act not autistic. This is a good book for neurotypical peers – one parent voices concern that it might not be best for autistic kids because they may not all be lucky to have friends who are willing to accommodate.

Sometimes Noise is Big: Life with Autism by Coelho, illus Robinson.* Ages 5 – 10. Sample text: “Sometimes noise is really big, even when it is small for everyone else. Sometimes I am so excited that I need to scream and run in circles to let it out.” Book description: “Flipping the perspective for neurotypicals, this book explains in simple terms some of the sensory issues experienced by children with autism. It shows situations which can be overwhelming and the ways that somebody with autism might react when there is too much going on.” Helpful to parents, caregivers and peers for explaining the perspective of an autistic person.

The Superhero Brain: Explaining autism to empower kids by Land.* Ages 4 – 8. The description says “This story speaks to children who have autism, and explains to them what it means in a way that leaves them feeling empowered and able to make their dreams come true. The story refers to sensory issues as “special powers” and explains how living with autism can be awesome and at the same time also feel tricky sometimes.” Reviewer Lena says “While every child with autism is different, the book touches on some common challenges around sensitive hearing, taste, smell… in an acknowledging and empowering way. It inspires to go look for your own abilities and what you are good at. At the same time it acknowledges that it will not always be easy, and you need love and support.” Short and simple text. There are multiple editions – “girl, dark skin”, “boy, light skin”, etc.

Tacos Anyone? An Autism Story by Ellis. Age 4 – 7. Bilingual English/Spanish book. About a brother who doesn’t understand his non-verbal sibling and can’t figure out how to play with him. A therapist explains that the brother is autistic and how to relate to him.

Understanding Sam and Asperger Syndrome by van Niekerk illus Venter. Ages 4 – 8. Tells about Sam, who doesn’t like loud noises, likes certain foods served certain ways, likes to play the same thing over and over on his cello, and has big meltdowns. After a trip to the fair, he sneaks out alone at night to go back to the ferris wheel. The family takes him to the doctor and he is diagnosed with Asperger’s. The doctor talks about how kids may have different strengths and challenges, and that working together as a team to understand Sam will make it easier for Sam and everyone else. Book ends with ten tips for kids on how to be a good friend to someone with Asperger’s. From the School Library Journal review: “Because of the interesting story line, the positive approach, and the notion that others can learn to help Sam instead of expecting him to change, this is an excellent introduction to the topic.”

Uniquely Wired: A Story About Autism and Its Gifts by Cook, illus DuFalla. Age 6 – 10. Told from the perspective of Zak, “I have autism. Some people say I have a disability. I don’t see it that way… I am uniquely wired… I have an incredible brain and I have a lot of gifts to share.” He talks about his passion for watches – “you might get tired of listening to me tell you about watches but I will never get tired of talking about them.” He explains how/why he doesn’t like scratchy tags, hugs, or eye contact. “I’m not being rude when I look away. I’m just trying to protect myself… [when] too much information goes into my head at once it makes me feel uncomfortable.” “Sometimes I flap my arms… it helps me calm down my brain and organize what I am thinking.” I honestly LOVE all the sections of the book where Zak is talking about himself, why he likes what he likes, and why the things that bother him bother him. They’re great! What I don’t love so much: the pages where other people are holding gift boxes showing all the gifts they get from interacting with Zak. For example, his sister is angry that Zak can take his watches to bed but she can’t take her toys to bed – “because of Zak, I have learned that fair doesn’t always mean equal and that’s okay. Thank you Zak for sharing your gifts with me!” They’re just cheesy and distracting. As Amazon reviewer TobysMommy says “having other characters saying thank you for sharing your gift and making me learn that… is really weird. Most of them don’t sound like gifts and kids won’t be fooled. Presenting other things as gifts would have been better, like being on time for things, being organized, calming oneself down, being gentle with younger children/animals, having an eye for detail, etc. And of course my autistic son still isn’t grasping the gifts metaphor at all. He thinks the boy is literally giving the people gifts in those boxes – sigh…”

We’re Amazing 1,2,3! A Story About Friendship and Autism (Sesame Street) by Kimmelman, illus Nelson. Ages 3 – 6. Book description says: “Elmo introduces his longtime friend Julia to Abby… Elmo explains that Julia has autism, so she does things a little differently. Julia sometimes avoids direct eye contact, flaps her arms when she’s excited, and is sensitive to some noises. But Abby soon learns that she also has a lot of things in common with Julia. All kids want love, friendship, and to have fun!” Reviews are all positive, with just this note: Reviewer Logan Nicholas says “…this story is never told from Julia’s POV. Only Elmo’s. Sure, most kids who read this book might not be autistic, but what about the ones who are? Wouldn’t it be better to write a story about autism from an autistic character’s point-of-view?”

“Why Is He Doing That?” A Children’s Book Educating Autism Awareness by Cuellar.* Age 4 – 8. Each two page spread talks about things Gerald does that might seem unusual to other kids, then explains why he does them, then ends with “Gerald is different, just like everyone else.” Sample text: “Sometimes Gerald asks the same question too many times! Sometimes the teacher becomes frustrated with all of Gerald’s repeated questions. One girl asked “Why is he doing that?” Gerald has autism. Children with autism need to know what is going to happen next. He needs to hear the answer over and over.” There’s things I really like about this book, based on the sample – like how it explains why things are helpful to Gerald, but it also does talk about how he’s frustrating to others and says “he does odd things” rather than “does things which may seem odd to others.”

What it is to be me, by Wine.* Ages 4 and up. Written by a mother of a child with Asperger’s, written from his perspective of what it means to have Asperger’s.

Why Johnny Doesn’t Flap: NT is OK! by Morton, illus Merry. Ages 5 – 9. Flips the standard approach of all these books around… Reviewer Julia Bascom says “reminds us that “normal” is in the eye of the beholder.” Description from the back of the book: “My friend Johnny is different from me. We have fun together, but sometimes he acts pretty strangely. …he can’t seem to stick to a routine, he stares right into your eyes… Johnny is neurotypical. I like Johnny, and I think being NT is OK.” Sample text “when something exciting happens, Johnny doesn’t respond like you would expect. He doesn’t flap his arms or jump up and down. He just moves the sides of his mouth up and slightly widens his eyes. Maybe be doesn’t know much about how to express emotions, but that’s OK.” Reviewer Steve Koppelman says “A wonderful, hilarious and impeccably written book that works as a children’s book, as parody, and as a terrific autism self-advocacy polemic all in one.”

Note about age guidelines – these are the ages for a neurotypical child. If you are choosing a book for an autistic child who has cognitive delays, adjust accordingly.

*Although I’m lucky enough to have access to an AMAZING public library system, they don’t have all these books, so some books I have not actually read, and can only base my comments here on product information, “look inside” previews and reviews available on Amazon. I have starred the books that I have not personally read in full.

Books for Tweens and Teens

In researching this list, I came across lots of recommendations for books for older children – tweens and teens. Here’s a few recommendations – you can learn more about them in Reading Rockets list of Children’s Books Featuring Characters with Autism and the ABA Program Guide’s 30 Best Children’s Books about the Autism Spectrum.

Non-Fiction / Guidebooks for Teens and Tweens

A Is for Autism F Is for Friend: A Kid’s Book for Making Friends with a Child Who Has Autism by Keating-Velasco.* 8 – 12 year olds. Description: “provides an inside look at the life of Chelsea… and explains that although she sees other kids playing and wants to join them, social interaction can be tricky for her.” Amazon reviewer Zosia Zaks says “I think these pages do a good job of explaining how we’d like to be friends but what makes it so hard to do so, and what simple accommodations could make being friends easier.”

The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents) by Verdick and Reeve, illus Lobyluch. Tips for school challenges, how to make and keep friends, self-care.

The Autism Acceptance Book: Being a Friend to Someone With Autism by Sabin. Age 8 – 12. An activity book about being a friend to someone with autism.

The Asperkid’s (Secret) Book of Social Rules: The Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger Syndrome by O’Toole. Author and her three children have Asperger’s. Easy to understand explanations of social rules that may not be obvious to tweens on the spectrum.

The Asperger Children’s Toolkit by Musgrave. Ages 8 – 12. For autistic children, to be used with a caregiver. Workbook with “cut and keep” activities.

How to Be Human: Diary of an Autistic Girl by Frenz. Age 8 – 12. Written and illustrated by an autistic teen who tells about challenges learning to read facial expressions, make friends, juggle social cues, and handle peer pressure.

Different Like Me: My Book of Autism Heroes by Elder, illustrated by Thomas.* 8 – 12 year olds. Told through the voice of an 8 year old autistic character. Describes the lives of people who found it difficult to fit into society, including Albert Einstein, Andy Warhol, Sir Isaac Newton, Dian Fossey, and more. Brief basic biographies (you can always google more info on any of the people described.) Many reviewers report that it was inspiring to have role models in many fields who were successful despite challenges. (Saying that these people had “autism” is speculation, but they are people who display some of the typical characteristics.)

Everybody is Different: A Book for Young People Who Have Brothers or Sisters with Autism by Bleach. A book for siblings that answers common questions.

How to Talk to An Autistic Kid by Stefanski (an autistic kid). A guide for typical kids to increase understanding of autistic kids and encourage NT’s to befriend them.

The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Higishida. Written by a non-verbal autistic person who uses an alphabet grid to answer common questions people have about those on the spectrum.  In her review of the book, Dr. Temple Grandin stated, “Everybody who is working with nonverbal individuals with autism should read it.”

Novels for Tweens and Teens featuring Autism

  • A Boy Called Bat by Arnold, illus by Santoso. A novel about an autistic boy who “adopts” a baby skunk.
  • Slug Days by Leach, illus Bender. Follows a girl on the spectrum named Lauren and provides insight into the way she sees the world.
  • Rules by Cynthia Lord – Humorous and heartwarming about family life with an autistic sibling.
  • Autism – the Invisible Cord – a Sibling’s Diary by Cain. A 14 year old character talks about her frustrations, hopes, and love for her brother.
  • The Categorical Universe by Phee. A novel about a 12 year old on the spectrum.
  • A Whole New Ballgame by Bildner illus by Probert. A new teacher changes all the routines, which is stressful for a character with autism.
  • Al Capone Does My Shirts by Choldenko. Mystery / historical fiction novel about a boy with an autistic sister.
  • Anything but Typical by Baskin. A story from the POV of an autistic boy who struggles with in-person social interactions, but writes online stories and builds an online friendship with a girl.
  • A Friend for Henry by Bailey, illus Song. A story about an autistic boy who is looking for a friend.

…And SO many more! See the Reading Rockets link above!

More Resources

For more on autism, read my post on Autism Acceptance Month.

National Autism Resources has a list of children’s books that are primarily about teaching behavioral skills to kids on the spectrum, such as: Calm Down Time, Hands are Not for Hitting, The Conversation Train, When My Worries Get Too Big, and Why Does Izzy Cover Her Ears?

If you like book recommendations, check out my other posts: Books Toddlers LoveBooks that Sing, Books for kids about STEMBooks for Children about SexualityTwenty Recommended Parenting Books,and books about teaching STEM to kids.

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.

 

The Super Picky Eater

photo of a child disgusted with food

If you have a “typical” kid, just check out my basic overview of toddler nutrition. If you’re one of the 30 – 50% of parents of toddlers/preschoolers who would describe your child as a “picky eater” then check out and try my tips for picky eaters. But, if your kid is a whole other level of picky eater – where you’ve tried all those tips, and your kid still eats a very limited set of foods, then this post is for you.

And I’m here in solidarity with you! I could easily make a list for you of all the foods my 8 year old is willing to eat. And they’re specific – I can’t say he eats yogurt. I can say he eats yoplait brand only and only these flavors: strawberry, strawberry-banana, and blueberry. When I say he eats chicken mcnuggets, I don’t mean any kind of breaded chicken product, I mean ONLY the ones from McDonald’s (or Wendy’s in a pinch).

And if you’re judging me for feeding my kid McNuggets, then here’s the thing – it’s the only meat he has ever put in his mouth in pretty much his entire life. And if you’re judging me for that, well, then you’ve never lived with a super picky eater, and this is not the post for you.

Why are some kids super picky?

There can be a wide variety of reasons. A child with an extremely strong sense of smell may be overloaded while eating – a child with a very limited sense of smell may not enjoy food. A child who had a traumatic experience with choking may be very hesitant to eat after that. Children who have food sensitivities may not be able to articulate them or understand them – they just know that sometimes they feel icky after they eat so they just eat less.

Many extreme picky eaters are either autistic, or have anxiety, or have sensory issues. Or like my son, they may have all three of these challenges.

This blog post, written by an autistic nine year old has given me the best insight into “The Reasons [They] Don’t Like to Eat.

“Sometimes I eat something and it tastes nice; it is the right color and it feels nice and soft in my mouth. But then some days I eat what you tell me is the same and it isn’t the same… I get upset. You ruined it. … You damage it if it has sauce or potatoes on it. Then it is not nugget skins, but some weird thing my brain does not know. So, all nuggets are dangerous. And I get scared again.”

I totally see this with my son. He will love blueberries for a long time – but then he gets one bad blueberry – an under-ripe overly tart one, or an over-ripe squishy icky one. Then for weeks he has a hard time trusting blueberries again. He prefers processed packaged food to real whole foods, because Cheez-Its taste the exact same and have the exact same texture every time. He can trust them. Bananas are a risky proposition.

If you’re having a hard time understanding this, just think about one of your preferences. Maybe you like Coke but Pepsi is really not the same and you’re disappointed if you have to drink it. Or you really like your coffee with half-and-half and Splenda. And if you’re on a trip and they only have skim milk and sugar, it’s just not the same, and it throws your morning off a little. Now, put yourself in the shoes of an anxious child, who doesn’t have the perspective and flexibility you’ve gained from experience, and perhaps you can understand the upset?

If your child is old enough (maybe 5 or older?) try asking them open-ended questions to learn about what they like, what they don’t like, and what worries them about food. Understanding this can guide you in the next steps to take.

Can you force them to try foods?

I have to be honest that I have never tried to force my child to eat. With my older kids, I could do a little wheedling and nagging, and they’d give it a try. With my youngest, the nagging doesn’t work, and I’ve always had the sense that if I tried to force it, it would be bad.

There are plenty of examples of super picky eaters who will gag or vomit if you try to force them to eat something. Then later on, they’ll gag or vomit if that food is even in the same room with them, even if they’re not being pushed to eat it. And their food repertoire becomes even more restricted.

I don’t know if that would be the case with my son. I do think he would have big meltdowns, and I do think it would damage the trust he has in me, and I think it might make eating new foods even more stressful for him.

Encouraging Them to Try to Broaden their Eating

Be sure to check out the tips in my picky eaters post, plus:

Steps to Eating

When introducing a new food, tips will often say “offer just a few bites… expect your child to have to try something 7 or more times before they accept it.” For a super picky eater, we need to take even smaller baby steps. This Steps to Eating chart is helpful in describing those steps… can the child tolerate being in the same room as the food? Can that food be at the same table? On their plate, but not touching any of their other food? Are they willing to try smelling the food? Touching it with one finger? Licking it? Each step closer to eating it is progress!

Food Chaining

Another helpful tool is food chaining. Think of a food your child likes. Level 1 is to give them very similar foods – same taste and texture – for example, with my son, we’ve introduced Tyson chicken nuggets (yes, not the most healthy option, but very similar to McNuggets, but something we can have in the freezer at home). Level 2 is to vary the taste, but keep the texture – maybe dip the nugget in sauce? Level 3 is to maintain the taste but change the texture – so chicken strips made with whole chicken breast rather than the ground / reconstituted chicken in a nugget. Level 4 is to vary the taste and texture – breaded fish patty?

Slow and Steady Changes – Texture and Color

Some young children are very picky about texture. At some food clinics, they will puree all the child’s food, and they gradually move toward chunky purees, then eventually solid foods. Some kids will eat only crunchy foods – so parents try lots of the veggie chips, kale chips and so on. Eventually hopefully moving to carrots and apples for crunch.

Some children are picky about color. If a child preferred white food, they could start with 90% mashed potatoes and 10% sweet potatoes, and gradually increase the orange.

Many picky eaters like very bland foods (white noodles, white bread). But a few are sensory seekers and want very intense flavors – you may need to spice everything up.

Record Progress

Take notes on what they tried, and whether they liked it, and how much they tried. Comment on how much you appreciate their flexibility and willingness to try.

Have them rank things on a scale from 1 to 10. If it’s 5 or higher, encourage them to try it again a few times in the next week. If it’s lower than 5, don’t offer it again for quite a while till you’ve had successes with other foods. A reward system might increase their motivation.

Limit Sensory Input at Mealtimes

If a child is easily over-stimulated, eating is a LOT of sensory input. Try eating in a quiet, calm place without a lot of other stimuli. Don’t talk too much about the food – just put it there and allow them to explore it.

Familiar Food in Unfamiliar Environments

I only ask my child to try new things when he’s having a good day – we’re relaxed, hanging out at home, all is going well. But when we’re in a challenging situation, I make food as easy as I can. To understand why, read this quote from the blog post cited above:

“Sometimes people even want me to change rooms to eat… School does that. You want me to move to some place, sit down, and eat what you have made… No one told me I would smell different things, hear different voices and touch different stuff, and now you even want me to taste things? It is too much, so I just freeze.”

When my son is having challenges at school, I want to make sure his lunchbox is filled with all of his familiar favorite comfort foods and that it always meets his expectations. There are always 5 items – there’s always a yogurt tube, always cheesy crackers, always two fruits and always either a peanut butter sandwich or apple slices with peanut butter. And if we’ve run out of any of those things, I tell him when I pack his lunch, and I explain the substitution I’ve made. I want to be sure that lunch at school is something that re-grounds him, not upsets him. We can try for more food variety in all the other meals in his week. And when we go on vacations or to family camp, we pack protein drinks, protein bars, and peanut butter crackers. I know we can always find fruits and grains he will eat, but these are the ways I ensure he gets protein.

When should you seek help?

If your child is a super picky eater, you should already be talking to their doctor about it for advice and to monitor their weight gain and development.

Also, watch for physical signs of food intolerances or allergies. Many “picky eaters” are later found to have food sensitivities. So, if you see rashes or eczema, or your child has frequent diarrhea or constipation, or frequently complains of a sore tummy, talk with your doctor to see whether any kind of allergy testing or food elimination would be warranted.

If a child often gags or chokes or has problems swallowing, they might benefit from a “swallow study” or work with an OT or speech-language pathologist to build their eating skills and muscle coordination.

But here are some red flags that they may need additional support:

  • It’s getting worse – their list of accepted foods is getting smaller and smaller. Maybe it used to be 20 foods, and now it’s 10.
  • You believe your child would starve or be hospitalized before they’d eat foods they don’t like.
  • They will only eat if someone else feeds them. (In a child who should be old enough to feed themselves)
  • If their pickiness is limiting their life – for example, they can’t go on play-dates or sleepovers or eat out at a restaurant due to food limitations.

If this is the case, talk to your child’s doctors about your next steps.

More ideas

Child-Directed Play: Floortime

floortime

Child-directed play is an intentional practice where you sit and play with a child, allowing them to guide the play, as  you follow along. The Greenspan Floortime approach describes this as:

  • Follow your child’s lead, i.e. enter the child’s world and join in their emotional flow;
  • Challenge her to be creative and spontaneous; and
  • Expand the action and interaction to include all or most of her senses and motor skills as well as different emotions

Floortime was created by Dr. Stanley Greenspan for children on the autism spectrum and those with developmental delays. It can also be used with typically developing children. It is helpful for any parent or caregiver who wants new ways to interact and have fun with a child, wants to feel more engaged with and connected to a child, and wants to know how best to interact with a child to foster communication skills, social-emotional development and cognitive learning.

How Floortime works:

Set the Stage

  • Find a time when you can focus on play, when you and your child are both well-rested and fed.
  • Be present – set aside your mobile devices and other distractions, relax, and stay focused on the interaction.
  • Gather items that interest your child and have them available, but not so many that it’s overwhelming.
  • Your position is important. Be in front of them – that’s better for connecting than it is to be side by side or for you to be behind them. Get down to their level – typically on the floor. Your physical nearness, affectionate touch, and eye contact help them to stay engaged.

Follow their Lead

  • Let them choose the activity. Offer toys that they love. It doesn’t matter what you play, it matters how you play.
  • Join in their play. Match their level of play – if they’re low key, you are too. If they’re very energetic, match that (without escalating up to wild.)
  • Don’t feel like you have to teach them. Just let them explore and discover. Copy the way that they play. If they signal that they want your help doing something, then help them, but don’t just jump in and do things they haven’t asked for.
  • Measuring intent. Watch their gaze, expressions and body language. Where is their attention? Let them know it’s OK to take initiative and start an activity.
  • If they are motivated, don’t change the activity. It’s OK to do the same thing over and over again.
  • Be playful! Find joy in your interaction. Their current interest may not be inherently interesting to you. But tune into how it gives them joy.
  • Look for the gleam in their eye. That’s a great sign that it’s working.

If it’s not working: Are you trying to control the play too much – do you need to step back? Are you being too passive and aimlessly following them around – how can you join them in interactive play? (Learn more about following their lead.)

Narration

If you feel tempted to ask a lot of questions, or do a lot of teaching, or you’re just over-talking, try observing silently, or responding to their play with simple reactions “uh oh!”, “what’s that?”, “hurray”.

If you want to talk, try narrating what they are doing. “You’re putting the toys in the basket. You noticed there’s only one toy left on the floor. Whoa, you dumped all the toys back on the floor so you can do it again!”

This narration tells them that you’re paying attention and that what they’re doing is important to you. You’re also building their language skills by giving them words to describe the things they do.

Use Emotional Expression and Responses to Engage

  • Expression – Use your eyes, facial expression, tone of voice and body language to connect and communicate. Your emotions (especially anticipation, surprise, and delight) help to attract their attention and keep them engaged. When you pair your words with emotional expression, it gives your child a better understanding of both the words and the emotions.
  • Observation and Response – Can you read their emotional cues? Do your expressions engage them more? If so, keep it up. If they’re seeming overwhelmed by you, back down a little – you’re following their lead.

Circles of communication

When Floortime is working well, it’s like a game of volleyball or ping pong. You know your child’s interests, so you “serve” by offering a toy. They “bounce back” to you by taking the toy. You talk to them about the toy. This back and forth interaction is where all the magic learning takes place. A young toddler, or a child with autism or delays, may only be able to go back and forth a few times before disconnecting. The older they are and the more play experience they have, the better they’ll get at this. The goal of Floortime is to build persistence – more of these circles of connection.

Once it’s working well, you settle into a flow of play – Floortime calls this “getting it cooking.”

If it’s not working: Are you waiting long enough for them to respond? Are they overwhelmed – are you talking too much or moving too fast? Are you following their interests and joining them where they are? (Watch for any expression, sound, or gesture that might invite you into their play.)

Stretch the Play

Once you’re “cooking” – you’re connected and have a nice back-and-forth pattern established, then you can work to take their play up a level.

Expand the play by adding in some new toy or new aspect of play, or offering some choices. For example, if they’ve been using blocks to make a stable for their toy horses, you can put a “roof” on one of the “stalls.” If they’ve served you the toy pizza over and over, ask for a drink to go with it. If you were playing peek a boo, drop the scarf and pretend to have a hard time finding it.

Expand just enough, but not too much. Your goal is sustained engagement – we want to keep out back-and-forth exchange going as long as we can. So, if your new extension keeps them engaged, and you’ve got that gleam, keep it up. If you lose their attention, back up a little.

If it’s not working: Some parents try to intervene too much. Some are too passive and don’t help child stretch.  Try to find the balance between following their lead and challenging them to interact, communicate, and think.

Tailoring to the Individual Child

Some children have sensory preferences – they really respond to sounds or to touch or to movement. Some children are easily overwhelmed by certain kinds of stimulation – sound or touch or smell might be too intense for them. Children may also prefer different speed of interaction – some like things to move slowly, some like fast moving play. This worksheet may be helpful if you feel like there are sensory or timing issues involved.

Benefits of Floortime

Some parents wonder – if I’m just playing the same simple game over and over, is my child actually learning anything? According to Autism Speaks, the back and forth play of Floortime “builds the foundation for shared attention, engagement and problem solving. Parents and therapists help the child maintain focus to sharpen interactions and abstract, logical thinking.” They also note these key aims: self-regulation, engagement in relationships, communication skills, and emotional learning.

Learn more

Learn more about tips for Floortime sessions, and see videos of parents and caregivers demonstrating these skills: