Tag Archives: autism

Accessing Developmental Testing

child working with blocks

Note: This post is tailored to families in Washington State, but the general process is similar elsewhere.

Monitoring

I encourage all parents and teachers to do developmental monitoring: from time to time check out a developmental checklist to be sure your child is on track. And read developmental newsletters for ideas on how to support well-rounded development. Or, you can check out the Washington Early Learning and Development Guidelines which are an amazing resource for children birth through grade 3, where each developmental level includes ways to support your child’s development, differences in development and guidelines for when/how to seek intervention services.

Screening

About 1 in 6 children has a developmental or behavioral issue, such as autism, ADHD, dyslexia, and developmental delays. Only 30% of those concerns would be detected just through the monitoring process. Early intervention from birth to age 3 can help children learn important skills, and getting support and services for children age 3 and up can have a huge benefit for their schooling.

If you are wondering if your child might have autism or ADHD or developmental delays, start with a screening tool. The results might help to reassure you that your child is actually developing normally or they could validate that seeking further assessment and testing would be beneficial. The ASQ – Ages and Stages questionnaire is one of the best available tools for overall development, and you can complete it yourself in about 15 minutes. The ASQ-SE screens for social-emotional development, and can help to identify possible autism signs. (Learn more about using the ASQ and ASQ-SE and understanding your child’s ASQ results.)

For Washington state residents: you can complete the ASQ and ASQ-SE online and a child development specialist from Within Reach will contact you with the results within a week and discuss those results with you. Oregon offers an online ASQ and ASQ-SE here that appear to be open to anyone – you will see the results when you complete the screening.

Talk with a Professional

A helpful second step is to talk to your child’s doctor or their teacher or childcare provider about your concerns, and share the results of the screening. Here is a tip sheet for talking with a doctor about your concerns.

Your child’s doctor may offer a referral to a specialist, such as a child neurologist or a child psychologist. You could also ask for a written referral for testing, using this form.

You can also directly contact your state’s early childhood system to request a free Child Find Evaluation to find out if your child qualifies for intervention services. You do not need a doctor’s referral to make this call.

Evaluation – for Children under 3

The Individuals with Disabilities Education Act, or IDEA (specifically in Part C) guarantees your child a right to a free developmental evaluation. Some people call it “birth to three services,” “early intervention,” or “Part C services”. If your child qualifies for intervention, services can be billed to insurance, or offered on a sliding scale. You will not be denied services if you can’t pay for them.

In Washington, evaluations are provided through ESIT – Early Support for Infants and Toddlers. (Info for Outside Washington.) Each county has a lead agency that processes referrals and schedules evaluations. All the agencies are listed here. To learn which agency serves your location, you can call the Help Me Grow Washington Hotline at 1-800-322-2588.This statewide, toll-free number offers help in English, Spanish and other languages.

The evaluation process uses standardized tools and observations to evaluate a child’s development in 5 areas: physical, cognitive, social-emotional, communication, adaptive / self-care, and sensory processing skills. The evaluator uses natural situations to look at these skills as a child plays, stacks blocks, draws, etc.

If the evaluation shows your child is eligible for services (eligibility criteria here), they may develop an IFSP – Individualized Family Service Plan – and you will be referred for early intervention services, such as physical therapy, occupational therapy, speech therapy, hearing or vision services. In most cases, services are provided in the home or in a child-care setting.

Learn more about IFSP and Early Intervention, and even more about IFSP.

Evaluations for Children age 3 – 5

In Washington, “Child Find” evaluations are offered through your school district. They are free but you must request them.

You can call your school district coordinator* and say: “I have concerns about my child’s development and I would like to have my child evaluated through the school system for preschool special education services. Can you help me or let me speak with someone who can?” Write down who you speak to, the date, and what was said; you might need this information later.

At some point, you will need to submit a written request for evaluation. Some parents start with that. A sample letter to request evaluation is available on PAVE’s website, or the state offers a referral form. (Learn more about how to make the request for an evaluation.)

From the time of request the school has 25 school days to decide whether to evaluate, then 35 school days to complete the evaluation. Make sure you keep a record of when you started the process. (Learn more about the referral and evaluation process.)

The evaluation might look like academic tests, questionnaires, informal observations of the child and parent interviews. They may measure: communication skills, hearing and vision, motor skills, social skills, academic skills, thinking and reasoning. (Learn more about evaluation.)

IDEA describes 14 disability categories. If your child meets the criteria under one of those categories, they are eligible for an Individualized Education Program (IEP). Learn more about developing an initial IEP. (Tips for preparing for your IEP meeting.)

If they don’t meet IDEA eligibility, but they have a disability that impacts a “major life activity” they can have a section 504 plan for accommodations which enable equitable access. (If they are found not eligible, learn what to do.)

Children with identified disabilities can receive free special education and related services at preschools run by the local public-school district or through Head Start or ECEAP. (Learn more about preschool placement.) Related services might include speech therapy, occupational therapy, mental health counseling or special transportation, etc.

If your child is older than 5:

Contact the public school that your child attends or that they would assigned to (if they are homeschooled or attending private school). From there, the process is much as described above.

Most specialized education is provided by special educators who “push in” with support in the general education classroom. (The IDEA requires education in the Least Restrictive Environment (LRE) to the greatest extent possible with typically developing peers.) Some children do not thrive in typical classrooms, and may receive “pull out” instruction in a specialized setting.

Families that homeschool or attend private school, have the option to receive some services from the public school system, even if they are not attending full-time. Learn more about private school Equitable Services plan.

Private Evaluations

In order to access publicly funded early intervention services and special education, you will only need to complete the free evaluations described above.

It is also possible to have a formal evaluation by a child psychologist or psychiatrist, a occupational therapist or speech/language pathologist, clinic specializing in autism, ADHD, etc. This may lead to a more detailed report about your child’s diagnosis and how you can support them, or it may make you eligible for additional services that could be covered by insurance, or may make your child eligible for medications. These diagnostic evaluations may be covered by your insurance or might require paying out of pocket, and can be expensive, so be sure you check about costs and coverage.

If you’re looking for a provider for a diagnosis, seek recommendations of knowledgeable professionals in your area from:

  • Support groups (for example, Autism Speaks has a national directory of providers;
  • People who have children or other family members with the condition
  • Governmental resources (for example, the Autism Guidebook for WA)
  • Your primary care provider or other health care professionals
  • Early intervention or special education providers

More Resources

*How to Contact Your School District

For children age 3 to 5, you’ll reach out to the special ed team in your child’s school district. Here’s info for all the districts in the state. k12.wa.us/sites/default/files/public/specialed/resourcelibrary/SpEdDirectory.pdf

Here are contacts for district’s on Seattle’s Eastside. (I teach for the Bellevue College Parent Education Program so these are the resources I refer to.) If their websites said what agency provides evaluations for ages birth to 3, I list that after the website URL. (If the Early Intervention provider is not listed, call Help Me Grow Washington Hotline at 1-800-322-2588.)

To refer your child for Kindering services, call (425) 653-4300 or submit an online referral form here.  Kindering provides helpful information about their telehealth evaluations.

Autism 101

For parents who are wondering why their child interacts with the world differently than some other children do, and are wondering whether it might be autism, it can be hard to understand all the different ways that autism might present. This post is intended as an overview of: the clinical definition of autism, understanding what “the spectrum” means, some of the signs and symptoms of how autism might present, information about screening and diagnosis, and resources to support parents of neurodiverse kids.

The Diagnostic Definition

When I was a kid, we tended to think of autistic people only as the people who showed significant impairment in multiple domains: non-verbal, developmentally delayed, frequently stimming (e.g. rocking, flapping their hands).

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 back under the umbrella of Autism Spectrum Disorder (ASD).

The criteria for an ASD diagnosis in the DSM-V require showing symptoms in both of these categories:
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 hypo-reactivity to sensory input.)

Or to put it in a less deficit-based language: A) may have challenges interpreting and following the same social rules as their neurotypical peers or expressing / responding to emotions in the same ways neurotypical people might  and B) strong preferences for predictable routines, specific interests and repetitive movements. Reactions to sensory input and external demands may be more intense than typical.

About 1 in 44 children is diagnosed with autism. Within the diagnostic criteria, there’s a range of behaviors from subtle to blatant, and from minimal impact to major impacts on school and home.

What is a spectrum disorder?

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

continuum labeled not autistic at one end, and very autistic at the other end

Or this (source)

continuum, labelled "a little quirky" on the left, "definitely autistic" in the middle, and "tragic" on the right

Autism is a more complex way of interacting with the world that can’t be described on a simple numeric scale, and can’t be simplified to either “not a problem” or “tragic”.

I’ll share a few different ways that it has been illustrated, so you can find the one the best resonates with your experience.

The autism spectrum can look 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 they explain that “the type and severity of characteristics varies from person to person” as seen in this diagram of three individuals’ ‘spectrums.’

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.”

More Zones to Consider

The DSM-V criteria are two-fold: a) social-emotional differences, and b) restricted, repetitive patterns.

You’ll notice in the illustrations above that they each split the signs of autism a little differently, but here are some of the typical patterns that some autistic people might display. [Note that all autistic people are individuals, so any individual may have some of these signs and not others. As a parent, I found that if I went down any checklist of signs, I had many that I said “nope, that doesn’t describe my kid” and others where I went “ooh boy – that is exactly what I see!”]

  • Social-emotional: may have challenges reading social cues, inferring what behavior is expected in a social situation, expressing their emotions in the same way a neurotypical person might expect them to or understanding / responding to other people’s emotions. Some may avoid eye contact. May be content playing / working by themselves and not appear to need the same social connections that others might. (Or might long for social connections and be very sensitive to rejection.)
    • The Floor Time approach to child-directed play can help an autistic child connect with others in play.
  • Sensory Processing: some autistic people may be hypo-sensitive to stimuli; many may be hyper-sensitive.
    • Tactile stimulation (like tags on clothing or seams on socks or being touched) may distract and distress them. Or, they may seek tactile input, banging their heads, pressing up against others, wanting lots of hugs and loving weighted vests and blankets.
    • Some may have lots of oral sensory issues. They may be super picky eaters or may gag easily. Others seek sensation, sucking and chewing on a variety of items.
    • Many autistic people can get overwhelmed by sounds – they may be less able to filter out all the noise that neurotypical people ignore (traffic on the road, the hum of the refrigerator…) and may be happiest with noise cancelling headphones on in loud situations.
  • Emotional regulation challenges: may have bigger reactions to a situation than typical. This could mean being so excited they bounce up and down, gallop around or flap their hands because the joy is too great to contain. It can mean meltdowns where too much stimuli, too many demands, or big disappointments overwhelm them and they react by screaming, hitting, or other behaviors for a prolonged period of time. (Note: the Zones of Regulation tools can be very helpful for autistic kids to work on emotional regulation skills.)
  • Preference for routine / difficulty adjusting to changes and transitions. Many thrive in an environment with lots of structure, and very predictable routines. When a transition between activities is coming, they need a little more warning that it’s coming and help letting go of one thing and moving on to something new. Sometimes even with all the help you can give, an unexpected change or hard transition from a beloved activity to anything else can cause big meltdowns.
  • Specialized Interests: A common characteristic is long-lasting, all-consuming  interest in specific topics, whether that’s dinosaurs, astronomy, flags, Rubik’s cubes, or collecting memorabilia. When they start to talk about that topic to someone, it may become a prolonged monologue where they may not recognize when the other person has lost interest and is ready to move on, because they cannot imagine ever losing interest in that topic. They may also love repetition and repetitive movements.
  • Impulse control and executive function may be harder for some autistic people. Discipline techniques that work with neurotypical folks may not be as effective with autistic children. (I find the Incredible Years and Ross Greene have the most helpful approaches.)
  • Language / communication: some autistic people are less verbal or non-verbal.
  • Motor skills: some autistic people may have motor challenges, ranging from “clumsy” to limited ability to control their movements,

Not everyone who has a few of these behaviors is autistic. And not everyone who is autistic has all these characteristics. And all of these characteristics can manifest in subtle, barely noticeable ways or can be blatantly obvious to the casual observer. Again, autism is a spectrum disorder that can be a bit hard to pin down.

It’s also worth noting autism can present differently in girls and be more difficult to diagnose especially for gifted girls).

Awareness vs. Acceptance

In much of popular culture, autism is viewed in a very negative light. You’ll hear people talking about it as a tragic diagnosis, and people seeking a “cure” for their child’s autism, and using deficit based language, even a supposed “advocate” may do so during events like Autism Awareness Month.

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.”

Autistic people have unique strengths. For example, many have intense attention to detail, a high degree of persistence, and ability to analyze data. Their “obsessive” interests can lead to stunning expertise in their chosen career fields. 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)

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 being due 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 “you just have to learn to cope with that”? If the neurotypical community understood more about neurodiverse people, and made simple adjustments, 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 about possible signs of autism, 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. Look here for all the details about how to access testing.

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.

Are you debating about testing?

Some parents debate about whether or not to test. Or they test, and get a diagnosis of “we can’t say it’s autism but we can’t rule it out.” They wonder about whether to seek out special education services. For more on those topics and on what to do while waiting for a diagnosis, check out my post on “Autism? ADHD? Delayed? Or just quirky?

What was the Cause? Is there a Cure?

It can be tempting to ask “what causes autism” and for many parents, that’s a quest to understand whether they “did something wrong” that led their child to be autistic. There’s no one cause for autism. There may be genetic factors, or environmental factors, or a combination of environmental factors with genetic susceptibility. Personally, I have not found it helpful to look backwards and wonder about the cause – it’s better to focus on what we need to do to move forward into the future.

I also do not seek a “cure” for autism. (Partially because that implies it is a problem that needs to be fixed rather than just a different way of being in the world which benefits from accommodations.) Some parents spend a great deal of time and energy seeking a way to fix their child. There are some effective treatments which can help make things more manageable for the family, but there are also some “treatments” you’ll find on YouTube videos or random people’s blogs that can either cause harm, or simply just take more time, energy and money than they are worth.

For example, many parents have reported significant improvements in behavior problems with dietary changes. If you find diet changes that are generally considered nutritionally sound and they prove helpful for you, then hurray! But if a special diet is prohibitively expensive, or if it deviates from mainstream nutritional advice and might cause nutritional deficits, or if your kid is just a super picky eater and it’s a huge battle, it’s worth knowing that there’s not a lot of research that proves this is essential.

Resources on Autism

General Resource Guides

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 you discover any materials that approach autism as a terrible disease to be cured, or focus on ways to “fix” autistic kids, set those aside. I personally 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. 

Autism Navigator has a free online class (approx 3 hours) on Autism in Toddlers. They have handouts you can print on everyday learning activities, how parents can support language and emotional skills, and Q&A for parents.

Discipline and Behavior Challenges

  • This article is short and helpful: 15 Behavior Strategies to Help Children with Autism.
  • There are tons of helpful resources at challengingbehavior.org: visual schedules, tip sheets on making daily routines easier, handouts on teaching emotional IQ, addressing behavior like hitting or biting.
  • If it’s available in your area, I highly 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.
  • Ross Greene has some really helpful tools, summarized as “Kids Want to Do Well – If they’re not doing well, ask yourself what skill or resources they are lacking.”
  • If emotional regulation is a challenge for your child, check out my post on Big Feelings and the Zones of Regulation approach.

Building Connections with Your Child

Floor Time, or Child Directed Play, is a powerful way to connect with any child, but especially children who have challenges with social-emotional connections. Click here to learn about Floor Time: child-directed play. On Autism Navigator, learn how to support social communication development, and transactional supports to promote learning.

More resources

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.

If you’ve got one of those kids whose brain and body are always moving super fast, leaping from one thing to the next, make sure to check out my post on “the race car brain.” If you’ve got a shy child who observes more than they engage, check out my post on the slow to warm up child.

Parenting Advice is not one-size-fits-all

Created with GIMP

I remember very early in my parenting career (in the mid-90’s) looking at a parenting book and feeling uncomfortable about the advice I found there – perhaps it was advocating for cry it out as a response to sleep problems or perhaps it was saying to not immediately respond to your child’s cries because it might spoil them. Those types of advice did not feel right to me as a parent at a gut level. Then I found other books that did feel right – (the Baby Book, Becoming the Parent You Want to Be, and Our Babies, Ourselves) and I found parent education classes as well. Those resources offered me the opportunity to learn that there are lots of different ways to parent children and no one-right-way-that-fits-all.

All parenting book authors are sharing ideas that worked for them as parents, and worked for their children or maybe that worked for their clients. If their methods work for you and your child, that’s great. But if not, that doesn’t mean you’re a bad parent or you have bad kids, it just means you need to find different advice. And you especially need to find advice and support that is strengths-based and responsive – instead of things that say / imply “if you do it this way it will always work, and if it doesn’t work then you’re a failure”, seek out things that say “here are some ideas that work well for many families. If they don’t work for you, here are other resources you could try.”

After 27 years of parenting and 23 years as a parent educator, I believe that even more strongly. And, as the parent of children who are “thrice exceptional” – gifted and autistic and ADD/ ADHD, I especially know it’s true. Different children need different parenting styles, and neurodiverse children may need different parenting approaches than neurotypical children.

For example, let’s talk about “picky eaters.” First, I’m going to say that 30 – 50% of parents say their preschool-aged children are picky eaters! So, if you’re in the 50% that doesn’t have this experience, count yourself lucky! (And don’t pat yourself on the back too much… it might be more about the kids’ temperament than about what you did as a parent.) I work with parents to re-frame some of their assumptions about picky eaters, and see things from their child’s perspective, and I give them lots of great tips I’ve gleaned over years in this work. But then someone says “but my kid is really picky – I’ve tried all those tips, and they still won’t eat!” And I say “I know… I’m right there with you.” Because my first child was a flexible, easy kid with food. My second was picky – turns out she has lots of allergies and intolerances and she knew that some foods made her feel sick or in pain – she couldn’t articulate that as a young child – she just was “picky.” And my third child is a whole other realm of picky eater – he has a VERY limited set of food he’ll eat. He is autistic with sensory issues, and has a hard time trusting food – if he has one bad blueberry, then it takes weeks or months to coax him back into trying blueberries again. So, I have another collection of tips for those super picky eaters, and I have a lot of empathy (and no judgment!) for the parents who are managing that.

And toilet learning… well, based both on all the reading I’ve done and classes I’ve taken, plus my own experiences with my 3 kids, I’ve got one set of standard issue recommendations on potty training, and then advanced tips for children who resist toileting. 20% of children go through a phase of refusing to poop in the potty. And 10% of children (usually boys) will have challenges with bed wetting up to age 8. For the parents who are already struggling with challenges, getting well-meaning advice from others who say “it’s easy – just do this and it will work” just makes them feel worse about themselves as parents. It is so much more helpful when someone says “wow, I’m sure you’ve already tried all the usual fixes – I’m sorry they haven’t worked for you. Can I help you find other resources or do you just need someone to tell you – ‘it’s OK, you’re doing your best’?”

Sometimes these challenges and delays will work themselves out if we just wait for it. Sometimes it may be helpful to seek professional support or testing to figure out if our child has particular challenges that need extra intervention. And as you’re working on challenges, it helps to find books, websites, educators, and/or other parents who offer advice that is helpful and relevant to you and to your unique child.

Today, I was reading advice on a parenting site, and I found something that troubled me. (I am not going to share the source, because otherwise the advice on the site was excellent, and I do not wish to criticize their whole approach – only this particular content which I will be contacting them about.) Here’s what it says:

These signs – things they say show you it’s time to set a limit – almost perfectly duplicate any list you can find of common symptoms of autism.

This troubled me, so I wanted to double-check myself on this. I showed this to my 23 year old, who is autistic, and just said “I was reading this blog post on parenting advice, and wanted to know what you think of it.” She immediately said “These aren’t signs that you need to set limits… it’s like they cut and pasted in the wrong list… these are all things that are normal for an autistic kid. They aren’t signs that ‘truly difficult behavior’ is coming… unless you try to force this kid to act neurotypical, and then yeah, you’re going to see some misbehavior!”

I told her that was exactly my impression. And I worry about parents of neurodiverse kids who would see this site and think… “oh, every day my kid shows all these signs! Either I’m a bad parent who is failing to connect with them, or they’re a bad kid with too many behavior problems.”

I do agree with the overall message of the parenting site that image is taken from – the idea that connection is important for discipline. When our children feel connected to us and valued by us, they want to behave well, and are responsive to our guidance.

I think it’s so important for parents and teachers to understand that connection and disconnection can look different for different kids. For example, for some children, it is absolutely true that eye contact shows they’re feeling connected and avoiding eye contact says they know they’re in trouble. However, many (not all) autistic people are uncomfortable with eye contact, and in many cultures, direct eye contact is a sign of disrespect. Demanding eye contact could set off behavioral problems rather than serving as a path to resolve them. For some children, placing your hand on theirs and having a conversation about what is happening will calm them and resolve problems. For other children, when they’re already on the verge of a meltdown, uninvited touch might set them off, or being asked to talk it through may overwhelm them.

If you do have a neurodiverse child (autism, ADHD, ODD, etc.) or if you have any child that seems particularly challenging to manage following typical advice, you may find that some resources are much more helpful to you than others, because they are either specialized for the neurodiverse population or are at least sensitive to it. Things I find particularly helpful are the Incredible Years program and challengingbehavior.org, the work of Ross Greene (“kids do well if they can“), the Zones of Regulation, and webinars from Bright and Quirky. Also read my post on “the race car brain“.

Another issue with parenting advice is that the vast majority of it is written by white, middle class folks, raised in the United States. (And yes, that description includes me, and I know it creates unintentional biases in my work, so feel free to call me on them!) And the research it is based on was primarily done with white, middle class folks in the United States. (Read this article on why that matters – as they say “the research, and the parenting advice based on it, might not apply to everyone who receives it.”) Thus, advice might be unintentionally racist, or classist, or may simply not be relevant to your life circumstances.

Based on their cultural backgrounds, parents may have different goals for their children, in areas such as independence, individualism vs. collectivism, self-esteem, and behavior, and thus may have different approaches to achieving those goals, such as differences in warmth / affection, responsiveness, and discipline. For example, physical punishment may be more common in some cultures than others, but to understand its function in a family, it helps to understand it in a broader cultural context. While co-sleeping with an infant may be viewed as unusual to some, bed-sharing is common in many cultures around the world, and education related to safer sleep practices should inform parents of how to minimize the risks, rather than condemning the practice. The best advice is responsive to cultural and socioeconomic differences, and acknowledges challenges, and build on strengths. If you feel like what you’re hearing and reading doesn’t suit your cultural values, seek out materials from those who share your cultural background. It is easier to find diverse view in the days of the internet than it was when all publishing was managed by white, middle class folks.

When you seek out parenting advice, I do encourage parents to check out a wide variety of sources to stimulate your thinking – I get really good ideas even from reading things I fundamentally disagree with. They broaden my perspective and cause me to further examine my own parenting choices to be sure they reflect my values and goals, and are helping my child reach their potential. They help me to notice differences between my parenting style and those of others in my community which helps me better explain and interpret what my child and I might see in their classmates’ experiences. And they help me double-check myself to be sure I’m not making any big mistakes. So, do read things outside your comfort zone for the sake of mind expansion.

But, when you’re struggling with a parenting challenge, and feeling discouraged about your parenting skills or your worthiness as a parent, or when you’re feeling really frustrated at your child, seek out the parenting advice that speaks to your soul. Advice that includes methods you can see yourself doing and doing consistently. Advice that seems like it could work for your unique child with their unique personality, strengths and challenges. And seek out the people whose advice acknowledges your strengths at the same time it supports you as you work to overcome your challenges.

Autistic? ADHD? SPD? Or Just “Quirky”?

As a parent educator, and as a parent of autistic children with ADHD, I’ve had multiple discussions with parents who are wondering whether their child is autistic or has ADHD or “just” sensory issues or whether there are developmental delays. Parents who are wondering whether they should have their child tested. Parents who received 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 things like “I see some symptoms, but I don’t think they’re autistic, because they don’t ______.”  [fill in the blank of a stereotyped assumption about how “all” autistic people behave].

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 social groups) but their insurance won’t cover it unless they have a diagnosis.

The Spectrum / Gray Areas

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.” I don’t remember anyone being called ADHD when I was a kid, but there were absolutely “hyper” kids, and “head in a cloud” kids.

We understand far more now, and have clear diagnostic criteria for ADHD, a better understanding of autism and sensory processing disorders, and solid research-based developmental milestones which help us more accurately diagnose delays.

But within these criteria, there’s still a spectrum…. a range of behaviors from subtle to blatant, and from minimal impact to major impacts on school and home. Some children present very obvious symptoms very early and get a quick referral for services. Many take longer to figure out.

When you look at any behavior scoring, there’s the “typical” kids. In this bell curve, the kids in the green zone of scoring are considered normal. The kids in the red zone are two standard deviations off of “normal” and typically qualify for things like IEP’s (or gifted services) or SSI disability payments. The kids in the yellow zone – one standard deviation off – would often benefit from some services / accommodations, but may not get diagnosed early or ever.

deviations

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 whether 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 a child would benefit from that they can only access if they have a diagnosis, then they should be tested. If you believe they are being labeled as lazy, or spoiled, or whatever judgmental label, and you are wondering if there may be an underlying cause, they could be 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.

I’ve talked to parents who worry that having a diagnosis will harm the child’s self-esteem, and wonder if it would be better to try to “pass” and get by without the diagnosis. I have talked to multiple adults who received diagnoses as adults (whether it’s a diagnosis of autism, of ADHD, of dyslexia, of auto-immune diseases…), and they pretty much all said that receiving a diagnosis was a relief. They’d always thought, or been told, that there was something wrong with them, and if they just “tried harder” or “quit whining” they would be successful. When they had a diagnosis, they were better able to understand their needs and felt more able to ask for the accommodations they need to be successful. And they’ve also discovered more about what their unique strengths are now that they’re not trying to be just like everybody else. They wonder how much further they could have gone in life if they had the diagnosis and the correct accommodations earlier in life.

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” or have asymmetrical development issues.

I do developmental screenings in my classes, and this can start the conversation with parents about developmental issues. If there’s a minor delay in one area at one time stamp, I just talk about ways to enhance learning in that area, but if I see more delays or persistent delays in that one area, we have a broader conversation about what might be going on there. Sometimes, 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.”

If I suspect a specific condition, I use the word, 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 or told us that those behaviors might be signs of autism. If anyone had the courage to have that conversation with us, we wouldn’t feel blindsided now, and we could have learned more about accommodations that would have helped us parent him more successfully and access services earlier.”

Re-Framing A Diagnosis

I also talk about autism, ADHD, and SPD differently than the common dialogue. Autism is often treated as a tragic thing. ADHD is often viewed as bad behavior which would be fixed if the parents only ______. Kids with sensory processing issues are viewed as over sensitive and told they just need to get over it.

I think it’s better to just think about these as a developmental difference 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.” We don’t assume that “learning to act normal” will “cure” them. We try not to let their label limit them and try to maximize their access to a full life. 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. The same is true for all accommodations.

And many of the “challenges” of these conditions actually come from societal attitudes or lack of understanding. If the neurotypical community understood more about neurodiverse people, it would greatly reduce the challenges of each condition. It turns out that some of the things we do to accommodate them also benefit all the other people in the room.

Screening

If you’re wondering about your child, or a child you know, start with a list of symptoms, or red flags to watch for. Or with a screening test. Here are some resources to try:

  • Milestones Checklists from the CDC. (And here’s info about other developmental resources)
  • Overall Developmental Screening: the Ages and Stages Questionnaire assesses fine and large motor skills, communication, problem-solving and social emotional development. Here’s how you can do your own ASQ screening and the ASQ-SE which focuses on social-emotional development.
  • Autism screening: For children under 2, check out Baby Navigator. If your child is 16 – 30 months old, try the Modified Checklist for Autism in Toddlers, available at www.autismspeaks.org/screen-your-child
  • For ADHD, consider the checklist of symptoms. Think about other children the same age as your child. Compared to them does your child have several of these challenges? Do they have these challenges only at home? Only outside the home? Only when doing things they don’t enjoy (like cleaning) or that don’t interest them (sitting still at a restaurant table)? If they have these challenges in all circumstances it is more likely to be ADHD. If you only occasionally see the symptoms, there may be another cause.

Diagnostic Testing

  • If you’re still concerned after completing a screening, 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.

I have a full post here on: Accessing Testing for Developmental Concerns.

What if they’re NOT diagnosed with a condition?

Sometimes you go through the steps of testing to be told your child is fine. Or that they’ll outgrow the challenges. Or they’re a quirky kid but only one standard deviation off, and thus don’t qualify for services.

If you feel strongly that 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 and may need to seek second opinions. 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. 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. A few months or a few years down the road, you may discover that they did outgrow it. 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.

In the meantime, try not to be overly focused on finding a label – an answer to “WHY is my kid different than other kids.” Or on how to “fix” them.

Instead, you may find it more helpful to think: “given that my kid is who they are, what can I do to support them?” Learn more about how other people have accommodated kids with similar challenges, and try those those things. Figure out simple things that help them be more successful. Adjust some things so they’re not under continuous stress and pressure, while still giving them appropriate challenges so they learn and grow and reach their potential. Don’t let the possible label limit them more than necessary.

More resources

  • To learn about autism, read my overview of autism which includes a lot more info on signs and symptoms, and also on supportive tools that help make it more manageable.
  • For possible ADHD: If you’ve got one of those kids whose brain and body are always moving super fast, leaping from one thing to the next, make sure to check out my post on “the race car brain.”
  • If you have a very “shy” kid who holds back, hovers on the edge, and observes, check out my post on the Slow to Warm Up Child.
  • Read about Accessing Developmental Testing.

A sample decision-making process

I can share my own experiences about developmental testing for my youngest. I’m not saying it’s the ideal story or the only approach, just one example.

As a parent, I suspected something was unusual about him from when he was about six months old – signs like when he got overstimulated, he’d purposely bump his head into things. If the usual routines were disrupted, he’d have big meltdowns. When he was a toddler, he would perseverate – 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 out of a meltdown by just handing him 8 objects and asking him to decide which one was Mercury 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’d 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 treatment and therapeutic social groups for him. Having access to therapies and supports are the upsides of having the official diagnosis. (There is a 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.)

In second and third grade, when kids are expected to sit still and pay attention for longer periods, he was having challenges with that, so we then learned more and had him evaluated for ADHD. That diagnosis allowed us to adjust his IEP for more accommodations which has helped him be more successful in school. And when he was 10, he was assessed to determine whether ADHD meds would be helpful for him, and they have, in fact, been very helpful. So, doing each of those evaluations when we did worked out for us. Your needs may be different.

We were hesitant to choose ADHD medication for my son, but again talked to adults we know with ADHD, and they universally recommended them, saying “on days without my meds, my brain just spins and spins and I can’t get the things done I need to get done and then I feel bad about myself and then I get less done… having my meds helps me be more the person I want to be.”

He will start middle school next year, and is far more focused and more organized than he used to be. We know that’s partially due to his meds, partially due to the extra supports he’s gotten from us and from school in learning organizational skills and executive function skills that might come naturally to others. He has far fewer emotional regulation issues and meltdowns than he had in the past. We know some of that is developmental, but most of it is due to the additional supports we have sought out (like pyramid model tools, Floor Time, ideas from Ross Greene and the Zones of Regulation) and the extra supports he has gotten from school due to his IEP.

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.